# Neuropathy



## JerseyGirl07093 (Jul 16, 2009)

I know I'm not the only one here on Dims with neuropathy so I was hoping that we could share information and tips on dealing with it here. It is so hard to find other people that have neuropathy. The best place that I ever got help and information was from other people online. People who have this disease know more than the doctors I think.
Before I had neuropathy I had never even heard of it. Now I wish I had never heard of it because it is a living hell.
As for me, I was diagnosed about 5 years ago. I have idiopathic neuropathy, which means my doctor is an idiot and I'm pathetic. Ba dum bum.  Actually, it means that they don't know the cause of my neuropathy. It started out as numbness in my toes and then came the tingling, burning, electric shocks, etc. as well as the numbness. I now have it in my feet and lower legs. Even though I take medication I still have a lot of pain. I am currently taking Neurontin and Tramadol. The doctors aren't really much help. They don't seem to know what to do. I worry about the disease progressing and getting worse. I don't even like to think about that sometimes.
I'd really like to hear from others that have neuropathy and what treatments you are using and what medication you take. What works and what doesn't work. Basically, I'd love to hear anything that you would like to share about this terrible condition. At least we will know we are not alone in our struggle.


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## Chef (Jul 23, 2009)

Same story, started with the weird numbness in the ball of my right foot. And then the lightning like wasp-sting firepoker-burning flash of pain in both feet. I blamed it on a freak injury and the docs more or less agreed with me. And I let it get worse for years with no treatment. Until it started to keep me up all night long. I would sleep with my feet hanging off the bed so nothing would touch them. 

Now I'm taking Neurontin three times a day, with a heavier dose at night since it literally knocks me out. I'm not sure if it really kills the pain, or if it makes me not care anymore, at least until morning.

Walking helps immensely. If I sit, I unconsciously massage my legs. Standing is the worst, and I find myself walking in small circles. And yes, the pain never goes away. Prior to getting medical attention, I was contemplating suicide and/or sawing my legs off. Amputation seems almost a blessing, if it would stop the progression from getting into my thighs.


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## imfree (Jul 23, 2009)

I thought I had neuropathy, but my numbness was the result of swelling
that accompanies cellulitis. The severity of my diabetes would certainly
predispose me to have neuropathy. My endocrinologist told me that
she read of a person actually recovering from neuropathy after the
individual's blood sugar had been brought under control.


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## Chef (Jul 23, 2009)

I've read that too. One source indicates that early diagnosis may reverse the condition, while another source said that it was irreversible. I still hold some hope that this nightmare will end, but I'm not holding my breath.


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## JerseyGirl07093 (Jul 27, 2009)

When I was first diagnosed I could swear that my doctor told me that if I took the medication (Neurontin) that my pain would get better by something like 80% and that I would be better in 6-8 months. It made it seem like neuropathy was a condition like a rash or something that would get better. Oh, how I wish. Well, mine has only gotten progressively worse. I think my Dr. is an idiot but there aren't many choices for me so I'm stuck with her. When I was telling her about symptoms I was having in my arms and hands and was afraid it was neuropathy she is the one who said "You can't get neuropathy in your arms."  Uh, yes you can. Guess she didn't get her money's worth out of medical school.

I take Neurontin 3X a day too. It helps but it isn't enough. It doesn't really knock me out, just makes me more tired in general. It is the one medication that I didn't really have that many bad side effects from. Chef, does it make you 'dopey' or forgetful of words or things like that? It happens to me and I hate it. I read somewhere that because of this side effect people have dubbed it 'Morontin'. It frustrates and embarrasses me sometimes.

Believe me, I too have thought of suicide and sawing my legs off (even though that wouldn't help). I still do. I just wish I knew of better treatment or medication that I could take. The next step it seems would be a stronger pain medication and doctors are leary of giving them to people because of addiction. But you are not an addict if you are taking them for a legitimate reason. Some days the pain and all that goes with it is so bad I don't even care if I become an addict I just want the pain to stop. When you have pain like that it clouds your whole life, you can't live normally when all you can do is focus on the pain.


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## Miss Vickie (Jul 27, 2009)

Oh my God, Jerseygirl. That just sounds awful. My brother has neuropathy in his hands and arms, so yes you can get it in your upper extremities.

Any chance you can get a different doctor?


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## JerseyGirl07093 (Jul 27, 2009)

Miss Vickie, not all doctors want to accept my insurance (Medicaid with an HMO) so my resources are limited. That, plus I don't drive so I can't travel to a doctor that is too far away. I went to another doctor in my area once and he just basically confirmed my diagnosis and had me try Lyrica instead of the Neurontin. It didn't work. lol The best care I got was from my regular GP. He is the one who upped my Neurontin, he is the one who finally started me on the pain pills after the neurologist kept brushing me off when I asked for something for the pain. Unfortunately, because of the cost of healthcare he could no longer stay in practice alone and had to move to another state and go into practice with other doctors. I miss him all the time, he was the best doctor I ever had. 
Yeah, sucks to be me. Sorry about the whining.


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## Chef (Jul 30, 2009)

JerseyGirl07093 said:


> When I was first diagnosed I could swear that my doctor told me that if I took the medication (Neurontin) that my pain would get better by something like 80% and that I would be better in 6-8 months. It made it seem like neuropathy was a condition like a rash or something that would get better. Oh, how I wish. Well, mine has only gotten progressively worse. I think my Dr. is an idiot but there aren't many choices for me so I'm stuck with her. When I was telling her about symptoms I was having in my arms and hands and was afraid it was neuropathy she is the one who said "You can't get neuropathy in your arms."  Uh, yes you can. Guess she didn't get her money's worth out of medical school.
> 
> I take Neurontin 3X a day too. It helps but it isn't enough. It doesn't really knock me out, just makes me more tired in general. It is the one medication that I didn't really have that many bad side effects from. Chef, does it make you 'dopey' or forgetful of words or things like that? It happens to me and I hate it. I read somewhere that because of this side effect people have dubbed it 'Morontin'. It frustrates and embarrasses me sometimes.
> 
> Believe me, I too have thought of suicide and sawing my legs off (even though that wouldn't help). I still do. I just wish I knew of better treatment or medication that I could take. The next step it seems would be a stronger pain medication and doctors are leary of giving them to people because of addiction. But you are not an addict if you are taking them for a legitimate reason. Some days the pain and all that goes with it is so bad I don't even care if I become an addict I just want the pain to stop. When you have pain like that it clouds your whole life, you can't live normally when all you can do is focus on the pain.



Yes, Morontin makes me dopey too. I will wait until a point in the evening that I won't be driving or doing something that could be hazardous before I take my evening BIG dose. I've also discovered sitting in a hot tub helps take the pain away, so its a must for any hotel that I stay at, or if I can get a suite with a jacuzzi.


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## Chef (Jul 30, 2009)

JerseyGirl07093 said:


> Miss Vickie, not all doctors want to accept my insurance (Medicaid with an HMO) so my resources are limited. That, plus I don't drive so I can't travel to a doctor that is too far away. I went to another doctor in my area once and he just basically confirmed my diagnosis and had me try Lyrica instead of the Neurontin. It didn't work. lol The best care I got was from my regular GP. He is the one who upped my Neurontin, he is the one who finally started me on the pain pills after the neurologist kept brushing me off when I asked for something for the pain. Unfortunately, because of the cost of healthcare he could no longer stay in practice alone and had to move to another state and go into practice with other doctors. I miss him all the time, he was the best doctor I ever had.
> Yeah, sucks to be me. Sorry about the whining.



Whine all you want to, at least I found another voice in the chorus.  My regular GP also has me using neurontin as she put it, it was the cheaper drug to use to see if it takes care of the problem before we try something else.

Also, a local university research center advertised recently on the radio asking for volunteers with neuropathy for a new therapy. I'll let you know if/when I can participate in the study, and if/when I discover something new.


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## JerseyGirl07093 (Jul 30, 2009)

I would say it was nice to find someone else who has neuropathy but since I wouldn't wish this on anyone that might sound like an insult. lol
My Neurontin makes me 'dopey' 24/7. It didn't happen at a smaller dose but as I increased the dose I noticed it. At first it was just little things like forgetting a word or not being as quick as I used to be when thinking of things. Now I just totally substitute one word for another when they don't even make sense. For example, I might ask someone to hand me a napkin and I'll say "Give me the pocketbook."  And I know the word is wrong, but it comes out anyway. It makes me feel stupid and embarrassed and I get frustrated because I'm not as 'quick' as I used to be and that was something I liked about myself, being 'on the ball' so to speak. 
Chef, you don't take any pain medication? I didn't for a long time but finally told my GP that I had to have something or I don't know what I was going to do! Now I take the pain meds and they're still not enough because with them you build up a tolerance over time (that plus maybe my neuropathy is worse). 
Also, do you know the exact cause of yours? You said a freak injury. Do you know of a specific injury or you just mean it's one of those things that happened and you aren't sure why? 
Hope I'm not being too nosy. It's just that when I find someone that has neuropathy I want to know all I can.
Thanks!


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## Chef (Jul 30, 2009)

JerseyGirl07093 said:


> I would say it was nice to find someone else who has neuropathy but since I wouldn't wish this on anyone that might sound like an insult. lol
> My Neurontin makes me 'dopey' 24/7. It didn't happen at a smaller dose but as I increased the dose I noticed it. At first it was just little things like forgetting a word or not being as quick as I used to be when thinking of things. Now I just totally substitute one word for another when they don't even make sense. For example, I might ask someone to hand me a napkin and I'll say "Give me the pocketbook."  And I know the word is wrong, but it comes out anyway. It makes me feel stupid and embarrassed and I get frustrated because I'm not as 'quick' as I used to be and that was something I liked about myself, being 'on the ball' so to speak.
> Chef, you don't take any pain medication? I didn't for a long time but finally told my GP that I had to have something or I don't know what I was going to do! Now I take the pain meds and they're still not enough because with them you build up a tolerance over time (that plus maybe my neuropathy is worse).
> Also, do you know the exact cause of yours? You said a freak injury. Do you know of a specific injury or you just mean it's one of those things that happened and you aren't sure why?
> ...



I thought my morontin was my pain medication.  Prior to that, I was taking gobs of OTC drugs like Aspirin and Tylenol. I can't take Advil because it makes the swelling and water retention worse. I don't really take any of the otc meds anymore because they just don't help, and I'm wary of the liver damage from tylenol. I had started to notice similar pain symptoms in my wrists and hands, just prior to my diabetes diagnosis. Since I've got my blood glucose under control, these symptoms have disappeared. I have the belief that my high carb diet, and my out of control blood glucose is what caused my neuropathy to surface. 
(and you're not being too nosey.. that's unpossible.  )

I take 100mg in the morning, and afternoon, and 600mg in the evening.


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## Miss Vickie (Jul 31, 2009)

JerseyGirl07093 said:


> Miss Vickie, not all doctors want to accept my insurance (Medicaid with an HMO) so my resources are limited. That, plus I don't drive so I can't travel to a doctor that is too far away. I went to another doctor in my area once and he just basically confirmed my diagnosis and had me try Lyrica instead of the Neurontin. It didn't work. lol The best care I got was from my regular GP. He is the one who upped my Neurontin, he is the one who finally started me on the pain pills after the neurologist kept brushing me off when I asked for something for the pain. Unfortunately, because of the cost of healthcare he could no longer stay in practice alone and had to move to another state and go into practice with other doctors. I miss him all the time, he was the best doctor I ever had.
> Yeah, sucks to be me. Sorry about the whining.



You're not whining at ALL. How frustrating to have no idea what caused this or why it's going on. Does medicaid cover chiropractic? Sometimes the kind of thing you describe is caused by pinched nerve (or nerves) and spinal manipulation can help. 

I hope they can figure out what's wrong with you and how to actually treat it, rather than just treating your symptoms (ineffectively at that!)

In the meantime, never feel bad for expressing yourself. If anyone has the right to whine (which you're not, by the way) it's YOU!


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## JerseyGirl07093 (Aug 3, 2009)

Chef said:


> I thought my morontin was my pain medication.  Prior to that, I was taking gobs of OTC drugs like Aspirin and Tylenol. I can't take Advil because it makes the swelling and water retention worse. I don't really take any of the otc meds anymore because they just don't help, and I'm wary of the liver damage from tylenol. I had started to notice similar pain symptoms in my wrists and hands, just prior to my diabetes diagnosis. Since I've got my blood glucose under control, these symptoms have disappeared. I have the belief that my high carb diet, and my out of control blood glucose is what caused my neuropathy to surface.
> (and you're not being too nosey.. that's unpossible.  )
> 
> I take 100mg in the morning, and afternoon, and 600mg in the evening.



I think of Neurontin as more of a drug that helps lessen my symptoms not one that I would take for sporadic pain. When I first started the Neurontin the symptoms of neuropathy lessened, the zaps and zings weren't quite as sharp and painful. My neurologist, who kept brushing me aside when I would ask for something for the pain, used to tell me to take an extra Neurontin if I had more pain that day. But that's not how it seems to work for me. As my pain got worse over time I upped the dose of the Neurontin to try and help that but after a certain point it wasn't doing anything more for the pain. That's when I first started taking the Tramadol. 
Right now I take 600mg. of Neurontin 3 times a day. Side effects: dopey-ness (was less when I took less mgs.), dizziness, probably some weight gain and water retention, and I get little spazzy jumps in my hands, etc. sometimes but I don't know if that's the Neurontin or Tramadol. Nothing I can't live with so far. 
My neurologist once asked me "What would happen if you stopped taking the Neurontin?"  :doh: Yeah, she's a keeper.


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## JerseyGirl07093 (Aug 11, 2009)

Some days my neuropathy is ok (at least as ok as it can be for having neuropathy) and the pain level I feel is at a minimum. Other days the pain is off the charts and there is nothing I can do to make it better. I can't find a pattern to why there is a difference and I have no idea why this happens. It's just like the luck of the draw. Will today be a 'good' day or will I want to jump off the roof? I can never tell.


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## Miss Vickie (Aug 11, 2009)

Yeah, the human body, go figure. Unpredictable and frustrating. My Sarcoid is like that -- I just never know sometimes.


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## Chef (Aug 11, 2009)

How do hot bath/hot tubs work for you? Since I tend to live in Hotels (tear out the walls.. I have accountants to pay for it all.. never mind.. long story) I have almost daily access to a hot tub. When it gets bad for me, I find that soak will help me out.


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## JerseyGirl07093 (Aug 13, 2009)

The one thing in my life that I am sad about is that I have never been in a hot tub!  I think I would love it so much and never want to get out!
Some people say heat works for them, some say cold. There are days when I think I just want to stick my feet in a pot of boiling (well, almost boiling, I think the boiling thing would be bad, although I probably wouldn't feel it 'til it was too late. lol) water and there are other times I think of sticking them in a big pot of ice water. Supposedly the heat might loosen you up and help with the pain and the cold would kind of make it so cold that you won't feel the pain either. I really haven't tried either. I thought of buying these big tubs to use that would fit my feet but when I think about actually doing it and all the water involved and the mess and everything I give up. I need a manservant to do these things for me, would make life much easier. :bow:


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## Chef (Aug 18, 2009)

JerseyGirl07093 said:


> The one thing in my life that I am sad about is that I have never been in a hot tub!  I think I would love it so much and never want to get out!
> Some people say heat works for them, some say cold. There are days when I think I just want to stick my feet in a pot of boiling (well, almost boiling, I think the boiling thing would be bad, although I probably wouldn't feel it 'til it was too late. lol) water and there are other times I think of sticking them in a big pot of ice water. Supposedly the heat might loosen you up and help with the pain and the cold would kind of make it so cold that you won't feel the pain either. I really haven't tried either. I thought of buying these big tubs to use that would fit my feet but when I think about actually doing it and all the water involved and the mess and everything I give up. I need a manservant to do these things for me, would make life much easier. :bow:



Back when I thought I had a clue about flyfishing, I would stand in ice cold stream water without waders until both legs were numb below waterlevel. Your post is suddenly making me want to start fishing again... Hmm.

What? You've never been in a hot tub? What about natural hot springs?


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## bdog (Aug 22, 2009)

Alpha lipoic acid.

It's been used in Europe for years to help with neuropathy.


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## pjbbwlvr (Aug 27, 2009)

Jersey, My wife Cathy has neuropathy, it developed after she finished her Chemotherapy and radiation treatments for Lympoma last March. The symptoms started one month later she would wake up with excrucisting pain in her wrists, fingers arms and shoulders. 
Of course having the doctors take responsibilty for causing this was bad enough. But getting satisfactory treatment was even worse. She was prescribed Lyrica which works a little by just dulling the pain. Finally her Oncologist put her on 30 days of a steroid and almost immediately the pain subsided. When she got off the steroids the pain started back in about three days. So what she does to cope with the pain is to continue to take the Lyrica and goes on and off the steroids when the pain gets intense. Her leg muscles are also stiff but she doesn't have any pain, and she has a very hard time climbing stairs, but she is trying to cope the best she can, God Bless Her!! 
I hope they come up with better treatments soon so that you, my wife, and everyone else can get relief from this hardly heard of disease!! Paul 





JerseyGirl07093 said:


> I know I'm not the only one here on Dims with neuropathy so I was hoping that we could share information and tips on dealing with it here. It is so hard to find other people that have neuropathy. The best place that I ever got help and information was from other people online. People who have this disease know more than the doctors I think.
> Before I had neuropathy I had never even heard of it. Now I wish I had never heard of it because it is a living hell.
> As for me, I was diagnosed about 5 years ago. I have idiopathic neuropathy, which means my doctor is an idiot and I'm pathetic. Ba dum bum.  Actually, it means that they don't know the cause of my neuropathy. It started out as numbness in my toes and then came the tingling, burning, electric shocks, etc. as well as the numbness. I now have it in my feet and lower legs. Even though I take medication I still have a lot of pain. I am currently taking Neurontin and Tramadol. The doctors aren't really much help. They don't seem to know what to do. I worry about the disease progressing and getting worse. I don't even like to think about that sometimes.
> I'd really like to hear from others that have neuropathy and what treatments you are using and what medication you take. What works and what doesn't work. Basically, I'd love to hear anything that you would like to share about this terrible condition. At least we will know we are not alone in our struggle.


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## superodalisque (Aug 27, 2009)

my neuropathy is neurologically related. it began in my toes. i went through a lot of tests. i had a spinal cord compression. a boney mass was removed last january. my doc prescribed gabupentin for me then. i think thats the generic for neurontin. the prognosis is that i should be able to be rid of it eventually because its supposedly nerve damage related due to my bruised spinal cord. but as everybody knows diagnosis on this stuff is tricky because there are so many causes and so many contributing causes.

at its worst i had electric shocks, cramping, severe pins and needles and lots of stiffness and severe burning sensation. sometimes i have swelling that my neurologist says is not related to the nerve damage. i'm not so sure about that. i am on diuretics and thats helping a bit. has anyone else had swelling related to thier neuropathy?

since june i haven't been taking gabupentin. i weaned myself of of it slowly because it has a tendency to make you dependent and dopey. i hated the sleepy way it made me feel. i don't like using drugs anyway. i was prescribed 300 mg 3x a day but i was only taking them at night to sleep. i've done a lot of physical therapy and all of my severe symptoms have gone away. i now have stiffness and numbness in my lower legs and feet but no more severe burning etc... i also self medicate with B6 suppliments to aid in healing my nerve damage. 

its a slow process but i do feel a bit better and stronger everyday. what i do notice as well is that neuropathy seems to have a lot of associated muscle wasting. it helps me a lot to excercise and get physical therapy. when i'm not very active i can feel myself getting weak and even having an increase in symptoms. has this been anyone else's experience? 

i have been tested for issues with my veins arteries etc.. they are all clear. but i do notice that the more active i am the less of a problem swelling tends to be. it also helps to elevate my feet. thats hard to do unless i'm sleeping which i don't do much of anyway because i'm generally pretty busy with all kinds of projects.


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## superodalisque (Aug 27, 2009)

bdog said:


> Alpha lipoic acid.
> 
> It's been used in Europe for years to help with neuropathy.




i'm not sure, but i heard this only helps if your neuropathy is diabetes related?


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## bdog (Aug 28, 2009)

superodalisque said:


> i'm not sure, but i heard this only helps if your neuropathy is diabetes related?



Most of the literature I've read on it was related to diabetes, but I'm diabetic so that's what I was researching.

A quick google search revealed this:
"A small study in Austria found that more than half of the cancer patients who took ALA after getting the chemotherapy drug oxaliplatin reported an improvement in neuropathy symptoms."

It's fairly inexpensive, over the counter, a strong antioxidant which is good for health in general, and there's little to no side effects. 

I'm not a doctor but just wanted to point it out.


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## JerseyGirl07093 (Sep 18, 2009)

Sorry I've been neglecting my little neuropathy thread, but sometimes I just don't want to deal with one more minute of this neuropathy. Even though I'm dealing with it 24/7 sometimes I'll just look at this thread and think I just can't talk about it for one more minute, I've had enough. Like if I don't acknowledge it then it won't exist. Ha! I wish! I'm really appreciating all the replies. Nice to know I'm not alone. 
A few weeks ago my mother and I both had blood work done at the doctor's office. She had to go back for something else and while she was getting the results of her tests she asked if he could tell her if there was anything wrong with mine. Everything was okay by the way, except my Potassium was borderline low so I'm working on that. She told him how it's hard for me to get to the office because of my neuropathy and all that walking, getting on and off the bus and climbing the stairs to his office. His office is up a big flight of stairs. They installed one of those lift chairs but do you think it was designed to hold my big butt? Heck no! Anyway...so he goes on to tell her that my neuropathy is so bad because of my fat and that it's my fat pressing on the nerves and making me have so much pain. He blames everything on my fat! Thank God I know better, but so should he! I guess no skinny people ever get neuropathy.


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## BigCutieAriel (Sep 19, 2009)

Thanks so much for having this thread because im a newbie to neuropathy


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## JerseyGirl07093 (Sep 21, 2009)

BigCutieAriel said:


> Thanks so much for having this thread because im a newbie to neuropathy



Welcome to the club. (The club no one wants to join. Ha!)


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## Chef (Sep 21, 2009)

I am definately proof that thinner people get neuropathy. 

I've been going through the motions, taking my meds, watching my diet, controlling my blood sugars, getting my exercise, wearing my compression socks; it actually started to feel like my neuropathy was starting to go away.. until I was on a long flight, out of meds, trying to get comfortable and trying to sleep the hours away.. but.. it was hell. All I could think about was getting my morontin. Gah..


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## JerseyGirl07093 (Sep 21, 2009)

BigCutieAriel said:


> Thanks so much for having this thread because im a newbie to neuropathy



If you feel up to it one of these days I'd appreciate it if you'd share your neuropathy story. How you got it, what meds you take, etc. I think it's important for us all to share because we can learn from each other and help each other. I've learned more from people on the internet who have neuropathy than I ever have from any doctor. 

Chef, I always have a fear that I'll be stranded on a desert island and won't have my medication. After the meds run out I'll just about lose my mind, the pain would be too much. Don't ask me how I'm ever supposedly going to get stranded on this island or why I think such things in the first place.


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## Chef (Sep 22, 2009)

JerseyGirl07093 said:


> If you feel up to it one of these days I'd appreciate it if you'd share your neuropathy story. How you got it, what meds you take, etc. I think it's important for us all to share because we can learn from each other and help each other. I've learned more from people on the internet who have neuropathy than I ever have from any doctor.
> 
> Chef, I always have a fear that I'll be stranded on a desert island and won't have my medication. After the meds run out I'll just about lose my mind, the pain would be too much. Don't ask me how I'm ever supposedly going to get stranded on this island or why I think such things in the first place.



While I haven't had the desert island fear, I use Neurontin exclusively, and I've been following the litigation that Pfizer has been put under. Neurontin is one of Pfizers best-selling drugs and its come under fire numerous times for the improper way it has been marketed. I want to bring my concerns up to my doctor and start working on alternative therapy if/when neurontin is pulled from the market.


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## JerseyGirl07093 (Sep 23, 2009)

Chef said:


> While I haven't had the desert island fear, I use Neurontin exclusively, and I've been following the litigation that Pfizer has been put under. Neurontin is one of Pfizers best-selling drugs and its come under fire numerous times for the improper way it has been marketed. I want to bring my concerns up to my doctor and start working on alternative therapy if/when neurontin is pulled from the market.



Lyrica is the new alternative to Neurontin. It's supposedly better. I've read stories from people who love it and stories from people who it did nothing for so I guess it depends on the person. I've tried Lyrica and it did nothing for me. I lowered my dose of Neurontin over a short period of time and I was on Lyrica for about a month and my pain was coming back and Lyrica wasn't helping at all. My doctor said if I didn't feel anything after a month I should just go back on the Neurontin and I did. Then it took a while for the Neurontin to start kicking in again. Yeah, that was a lot of fun. Not.


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## Chef (Sep 23, 2009)

JerseyGirl07093 said:


> Lyrica is the new alternative to Neurontin. It's supposedly better. I've read stories from people who love it and stories from people who it did nothing for so I guess it depends on the person. I've tried Lyrica and it did nothing for me. I lowered my dose of Neurontin over a short period of time and I was on Lyrica for about a month and my pain was coming back and Lyrica wasn't helping at all. My doctor said if I didn't feel anything after a month I should just go back on the Neurontin and I did. Then it took a while for the Neurontin to start kicking in again. Yeah, that was a lot of fun. Not.



I also had to work up on Neurontin.. a week with one 300m at night.. then another week with two 300m doses, morning and night, but the morning dosage was making me looopy.. so then it was 100m in the monring and 600m at night.


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## JerseyGirl07093 (Sep 23, 2009)

A lot of times my feet hurt so much all day and I can barely get around but then they suddenly feel better at night. Well, you know what? Most people do their business during the DAY. I need to feel good during the daylight hours so I can go to the store or to doctor's appointments. The doctor isn't open at midnight and neither are the stores around my house that I can get to. You have no idea how frustrating this is and how it pisses me off. Neuropathy in general pisses me off but this is just another side effect that makes no sense. You don't know how much I wish I could fly! I'd ride around on a magic carpet and go anywhere I wanted to. Take that neuropathy!


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## Chef (Sep 25, 2009)

JerseyGirl07093 said:


> A lot of times my feet hurt so much all day and I can barely get around but then they suddenly feel better at night. Well, you know what? Most people do their business during the DAY. I need to feel good during the daylight hours so I can go to the store or to doctor's appointments. The doctor isn't open at midnight and neither are the stores around my house that I can get to. You have no idea how frustrating this is and how it pisses me off. Neuropathy in general pisses me off but this is just another side effect that makes no sense. You don't know how much I wish I could fly! I'd ride around on a magic carpet and go anywhere I wanted to. Take that neuropathy!



I want to rep you for that post.. but I have to spread it around first.


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## Chef (Oct 23, 2009)

I'm participating in a study involving an experimental drug used in the treatment/care of neuropathy. In the preliminary interview, I was asked if I had used Lyrica. I'm not sure if it was a disqualifying question, but I have not. I also gave them the list of meds I'm currently taking.

My next step is the physical exam portion, which will take approx. four hours to complete, next Tuesday. At which point I'll know if I qualify, or if I have something else that disqualifies me. 

Its an 18 week study. I'm not sure if I will be sworn to secrecy, but I'll probably tell anyway.

My worries are a) I get to participate, but they give me the placebo. b) I have to stop taking morontin, and I don't get something to compensate; and c) the new drug is WONDERFUL, but after the study won't be released for 10 years.


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## JerseyGirl07093 (Oct 28, 2009)

Good luck with the study chef, I hope you get to do it and I hope it works well for you. Maybe you'll help bring a new wonder drug to the market! 
I can understand your fear about being given the placebo and not having something to compensate for it. That happened to me when I was trying to switch from Neurontin from Lyrica. Nothing was working and all I had was pain. Not fun!


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## Chef (Oct 29, 2009)

JerseyGirl07093 said:


> Good luck with the study chef, I hope you get to do it and I hope it works well for you. Maybe you'll help bring a new wonder drug to the market!
> I can understand your fear about being given the placebo and not having something to compensate for it. That happened to me when I was trying to switch from Neurontin from Lyrica. Nothing was working and all I had was pain. Not fun!



I'm gone thru preliminary tests, documentation, etc. My first fear has been realized, if chosen, I would undergo a washout of my current pain meds for up to 5 weeks, given a 'rescue' med of Extra-Strength Tylenol to take when needed. Then I would either be on the placebo group, the "experimental" drug group, or in the alternative med group, using Lyrica. 

The good news, is that this isn't the first clinical trial, and that 95% of known side-effects are given for the experimental drug. (The side-effects given looked like the sideeffect list for neurontin. So it is considered somewhat safe, however, there have been some rare occurrences of seizure. I go back tomorrow to be trained in the phone call/voting portion of trial, at which point I will be told if I have been chosen to participate.


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## Chef (Nov 3, 2009)

I didn't make the cut. I was told that they'll keep me in their "database" and let me know if another study comes up. :|


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## MizzSnakeBite (Nov 3, 2009)

JerseyGirl07093 said:


> I am currently taking Neurontin and Tramadol.



Hi there,
I have neuropathy, Reflex Sympathetic Dystrophy, Fibro, and a host of other problems caused by medications, etc. Regarding the Neurontin, I've been on that at the highest dose. I've been on Ultram too. I've been on probably a hundred different medications.

I'm NOT a doctor, but you might ask about being put on Lyrica. It's extremely similar to Neurontin (just one molecule difference), but it has helped me sooooooooooo much more than Neurontin ever did.

As for doctors and pain.......well, they're morons (and I'm being VERY nice. I must be coming down with something  ). It's very, very hard to find a good pain doctor (I hope you're seeing one, not just a neurologist (don't get me started on them and neurosurgeons). I've found it most helpful to bring a friend or family member into the exam room with me. The doctor spends more time with you, is more respectful, and the thought that you're a drug-seeker seems to diminish......it's like they see more you as a person, not just a file or case. 

If you don't like the doctor, by all means find a new one, BUT a word of advice.......don't go from doctor to doctor or the next doctor (and other doctors not even treating you for neuropathy) will see you as a drug-seeker and either not want to see you, decrease or stop your pain meds, and/or brush you off when you're needing assistance. 

As of this coming February (it was a nice "the day before Valentine's Day" gift ), I've been dealing with all the pain and the hassle for 15 years.

If you have any questions on treatments, surgeries, etc, feel free to PM me if you wish to. I know too much about this crap.  
Mizz SnakeBite (I'd like to latch onto some of my past and present doctors )

P.S. Know anyone with a TENS unit? See if they'll let you borrow it and see if it helps. Mizz NOT a Doctor


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## MizzSnakeBite (Nov 3, 2009)

Chef said:


> Amputation seems almost a blessing, if it would stop the progression from getting into my thighs.



Hey there,

I'm not sure if you're serious about the amputation or not, but I'll answer as if you are serious about it. Two words for you: DON'T DO IT! Whoops, my bad, that was three words. :blush:

The Reflex Sympathetic Dystrophy I had (still have) in my right arm was becoming worse and spreading upwards. Amputation was an option, and an option one of my doctors and I were seriously contemplating. Here's the problems with amputation of a limb with a nerve disorder, 1) It can spread upwards from the amputation site, 2) phantom nerve pain (that can be worse than the pain you're already in.), and 3) you would have to learn how to use a prosthetic limb AND they are almost always very painful to the "stump." 

After speaking candidly with one of my pain doctors I trusted, I decided not to do it.

I'm sure there's more, but it's almost one and I'm off my game. 
Mizz NOT a Doctor


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## moore2me (Nov 3, 2009)

Chef said:


> I'm participating in a study involving an experimental drug used in the treatment/care of neuropathy. In the preliminary interview, I was asked if I had used Lyrica. I'm not sure if it was a disqualifying question, but I have not. I also gave them the list of meds I'm currently taking.
> 
> My next step is the physical exam portion, which will take approx. four hours to complete, next Tuesday. At which point I'll know if I qualify, or if I have something else that disqualifies me.
> 
> ...




There are some other possibilities I think. They sometimes "*fast track"* a drug that is badly needed to relieve suffering. This means the 10 year waiting period is shortened.

*Or, sometimes drugs that are not available in the US yet are available in Canada, Mexico, Europe or other countries. * It is not unusual for people really needing the yet to be approved medication to go out of the country for their meds. They do it in person or via the internet.

*Use other than the approved one.* Sometimes a drug is approved for one purpose BUT the drug is used for another ailment. An example of this is Topamax. This drug is used to treat seizures but also has been found to prevent migranes. So you can find a doctor to prescribe the medicine for a use other than which it was approved by the FDA.

Sometimes *orphan drugs *are being used in testing. This means the drug was originally approved by the FDA, but the public & professionals stopped the common usage because of side effects to the target audience. An example of this is thalidomide. It was used to in Europe 40 or so years ago to prevent morning sickness in pregnant women. Then they found the drug also cause horrible birth defects in children. However, in the last 10 years or so, the drug has come into use again to treat leprosy and other skin disorders that are difficult to cure. The drug works miracles on such cases. We just have to make sure it's not given to pregnant women.

One last possibility is to write the company and the FDA about the drug and explain to them the medical necessity you have (such as your amputation story). It wouldn't hurt to send a letter to the President and the Secretary of Health too. See if you can get some of the treatment (in cooperation with doctors) ahead of its general release.


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## Ho Ho Tai (Nov 7, 2009)

Jerseygal - you and I exchanged a few comments on the topic of neuropathy some time ago. I had mentioned my neuropathy issue in a post on biking and mobility You sent me a comment, speculating a bit on whether you might start a Neuropathy thread. I seldom get 'south' of the Forum (well, I have to admit the occasional foray to the pay sites - hey, I'm only human) and I didn't notice that you had started your thread until quite recently.

I should introduce myself to the rest of the forum participants. I am currently 72 y.o. and quite active for my age (hell, I'm active for the average 40 y.o.) I began having symptoms in my feet not long after I had a bit of brain surgery.

(Not as serious as it sounds, and you can hardly see the electrodes. It had to do with a small tumor on my brain stem, discovered in 1994. It wasn't doing any damage by itself, but was plugging up the channel that leads from the brain's 'ventricle' to the spinal column. Cerebro-spinal fluid is generated all along this conduit. Because the fluid couldn't flow out of the ventricle, it was causing hydrocephalus, and that was causing the problem. The brain was being squished against the skull. The effect was a bit like stepping on a ten layer circuit board. Pathways were forming which never should have formed. The fix was to leave the tumor alone and install a 'shunt', basically a hose run through a hole in the skull, through the brain, and into the ventricle. This happened in early 1995. The hose runs down under the scalp, over the sternum but under the skin, finally dumping the excess fluid into the abdomen. See? I have a good excuse for that Ho Ho Tai tummy.)

The symptoms of neuropathy were pretty typical, starting as a sensation of wet cotton between my toes, progressing to a perceived numbness, itching, various erratic temperature sensations, and, finally, some loss of control of some of the small muscles in the feet that contribute to balance.

But, after 15 years, that's it!

A few years after it began, I had a physical work-up through our HMO. The problem was 'identified' as non-diabetic idiopathic neuropathy. Some years later, I had a two-day exam at Mayo Clinic. The diagnosis was 'cryptogenic non-diabetic neuropathy'. In other words, neither knew what the hell was going on, but they had to call it something.

The closest I have come to finding a cause was a physician's comment in my file from over a decade ago, noting a high level of vitamin B-6. One can Google [ vitamin b6 neuropathy ] and come up with many references which claim that an excess of B-6 can cause neuropathy. However, you will find nearly as many claiming that B-6 can CURE neuropathy.

So, who knows?

My medical record on this topic is far from complete, but there is a chart of B-6, going back only a few years. I can't replicate it here, but it goes from a peak of 110 ng/ml in 2003 to a steady state of around 20 ng/ml since then. I've no idea what it means, nor whether there was a connection when the symptoms started. I would suggest that any of you with non-diabetic neuro be tested for B-6, or look back in your medical records to find any correlation.


I have a neighbor, a few years older than I am, who went from being symptomless to needing special support shoes and a walker, in just two years. So, I guess I'm very lucky - or just might be doing something right. The latter is why I'm posting to this thread. I don't know if anything in my lifestyle is applicable to any of the rest of you, but I'll share it anyway.

Though not now, or ever in the past, have I been anything like a sportsman, I have tried to stay pretty fit for the last 25 years. Currently, I hit our fitness club 2 -3 times a week and do the following:

1. Warm up on the treadmill by walking, not running, for about 25 minutes, starting at 3.6 mph and progressing to 4.8 or 5.0 mph.
2. I do three leg exercises, multiple sets at progressive weight.
2.a Leg press, starting at 200 lb and 14 reps and progressing to 500 lb., at a single rep.
2.b,c. Leg curls and leg extensions, both four sets, multiple reps, 80 lb. to 140 lb.
3. I don't have nearly the arm strength as I do leg strength - I have tendon damage in both arms - but do four machines, various sets, reps and weights, up, usually to 100 lb.

Additionally, Mrs Ho Ho and I do as much biking as weather and time permit. A 20 mile ride is nothing. We have done numerous 40 -45 mile rides and a few from 50 to 60 miles. We bought new bikes this year and had hoped to hit the 75 mile level, but weather, bike tuning, and body issues have prevented that - so far! This Saturday is supposed to be beautiful, up here in the northland, and we might just make it.

The point of stating all this is that we push a LOT of oxygen through our bodies. I believe personally (w/o proof) that the strenuous leg activity may result in new nerve paths being formed almost as fast at the neuropathy eats up the old ones. But I am firmly convinced that oxygen is the wonder drug of all time.

I am fairly compact, muscular and chesty; currently 5'9" and about 180-185. I don't exercise to lose weight, but have none the less dropped about 20 lb. over as many years.

Aside from the neuropathy and some aches and pains, I feel pretty darn good for 72, an age at which I expected to have been pushing up daisies for years.

I don't know if exercise, whether aerobic or resistance, will do any thing for your neuropathy but, if you are not exercising now, please start doing so at a level commensurate with your ability, and a good physical exam.

By the way, my symptoms, and all the erratic nerve and sensor messages, are normally quite tolerable. I do not take anything specific to neuropathy, though I do use ibuprofen regularly for my other aches and pains. The most bothersome thing happens rather often when I go to bed. My feet have the sensation of being very cold, but they are of normal temperature to the touch of my hand. My fix for this is to wear a pair of ancient, rather rough wool sox - the ragg sock that was common decades ago. The itching and tingling from the wool seem to override the spurious temperature messages and I drift off to sleep, quite content.


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## MizzSnakeBite (Nov 7, 2009)

Ho Ho Tai said:


> The point of stating all this is that we push a LOT of oxygen through our bodies. I believe personally (w/o proof) that the strenuous leg activity may result in new nerve paths being formed almost as fast at the neuropathy eats up the old ones. But I am firmly convinced that oxygen is the wonder drug of all time.



Wow........that's amazing that you're able to workout so much! I really need to get my act together and start.

Someone in the medical field told me that an increase in oxygen in the blood does decrease pain, so yes, it is the wonder drug on all time. 

For anyone that has cold feet that cannot be controlled by layers of socks and blankets, I got a tip from someone I met on a pain group. Go to a sporting goods store and buy these socks that hunters often wear. They have a battery and warm up. I haven't purchased any yet, but I think I might this year if it's a cold winter (for Texas lol).

http://www.thunderboltsocks.com/


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## Ho Ho Tai (Nov 7, 2009)

MizzSnakeBite said:


> Wow........that's amazing that you're able to workout so much! I really need to get my act together and start.
> 
> Someone in the medical field told me that an increase in oxygen in the blood does decrease pain, so yes, it is the wonder drug on all time.
> 
> ...



MizzSnakeBite (gee! I hope you're not as nasty as your handle makes you sound.)

Despite the difficulties of age, I do have good circulation, and that includes my feet. When they feel cold, a touch of my hand will generally confirm that they are not - it is just the spurious signals caused by the neuropathy. The kind of sox I sometimes wear in bed are not really thick enough to be much insulation. They are the old itchy, scratchy kind. If you put on a sweater made of the same stuff, you would be tearing it off in an instant. I think they work by stimulating the nerves in my feet - especially toes - to send out a different signal, and it is one that my brain interprets as 'normal'.

Up here in Minnesota, real wool outdoor sox need to cope with temps well below zero. Yeah, even down to -40 F. In addition, you need well-insulated boots, a good cardiovascular system, and a bit of activity to keep the blood flowing. And, most important of all, wear a warm cap. It's no kiddin' that a significant portion of heat loss occurs though the uninsulated head. This is highly variable, but is discussed from a scientific perspective in this article. Some 72 years of living in Minnesota, (other than 4 years of living in Massachusetts - hardly the banana belt) confirms this.

But try this little trick: if your feet are cold in bed, put on a stocking cap - any kind, wool, acrylic, whatever. Within minutes, your feet should be warming up. (Something else that is even more help is a nice, warm bed partner, like Mrs Ho Ho, who is willing to share.)

I have speculated to various physicians than part of my neuropathy may be due to foot damage incurred in my youth. I delivered newspapers in Duluth in my pre-teen and teen years - by bike in the summer, on foot in the winter. In those days, there was nothing like the warm boots and parkas we have now. I had old-fashioned buckle overshoes over my regular shoes, and not such great sox either. My best jacket was a leather one that turned into boiler plate when it was cold. I would stuff newspapers inside it for insulation.

Many times, I arrived home with feet numb with cold. My mom thawed them out in a pail of warm water, but the pain of re-warming made me cry every time. It was the first, and the worst, job I have ever had. Supposed to build character. Yeah, at the expense of my health.

But all that was long ago, in a universe far, far away. The convoluted path I trod to my current happy life was worth it, even if trod with numb feet.

MizzSnakeBite, maybe I should change my handle to MrFrostBite.


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## MizzSnakeBite (Nov 8, 2009)

Ho Ho Tai said:


> MizzSnakeBite (gee! I hope you're not as nasty as your handle makes you sound.)
> 
> Despite the difficulties of age, I do have good circulation, and that includes my feet. When they feel cold, a touch of my hand will generally confirm that they are not - it is just the spurious signals caused by the neuropathy. The kind of sox I sometimes wear in bed are not really thick enough to be much insulation. They are the old itchy, scratchy kind. If you put on a sweater made of the same stuff, you would be tearing it off in an instant. I think they work by stimulating the nerves in my feet - especially toes - to send out a different signal, and it is one that my brain interprets as 'normal'.
> 
> ...



Nah, I'm nice (depending on whom you're asking  ). I got that nickname from a guy I was seeing. He was used to me being all nice and everything, but then he purposefully pushed my buttons, so I "snapped" back. He apparently thought I would take it; he was wrong. 

We get all crazy here in TX when we get snow flurries; everything shuts down. :blink: Oh well, most cannot stand our heat.
Mizz


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## JerseyGirl07093 (Nov 27, 2009)

Sometimes I think I should stop going to any neuropathy message boards etc. that I come across. I go there hoping to find some advice or some sort of 'miracle' that will help me deal with this pain and what do I always find? People just like me who are in just as much pain. Now while it is nice to know I'm not the only one suffering it seems that no one is healing either. Everyone is in so much pain and they don't know what to do. They seem as desperate as I do and no one seems to have much of an answer. Neuropathy is like a silent painful epidemic. The more I read the more I get depressed. I swear I start feeling pain just from reading about other's pain! Then if I read about how it gets worse or the horrible things that can happen to me I get so depressed that I just wind up crying and have to stop reading.
To top it all off the last week or so I've been having weird feelings in my hands and have been worried that I might get neuropathy there too. I had something like this before but it seemed to go away so I am praying that this does too. If I got neuropathy in my hands and arms like I have in my legs and feet I don't know what I would do. No way could I live like that. I don't even know how I live like I do now. As if you could call this 'living'.


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## Ho Ho Tai (Nov 27, 2009)

JerseyGirl07093 said:


> Sometimes I think I should stop going to any neuropathy message boards etc. that I come across. I go there hoping to find some advice or some sort of 'miracle' that will help me deal with this pain and what do I always find? People just like me who are in just as much pain. Now while it is nice to know I'm not the only one suffering it seems that no one is healing either. Everyone is in so much pain and they don't know what to do. They seem as desperate as I do and no one seems to have much of an answer. Neuropathy is like a silent painful epidemic. The more I read the more I get depressed. I swear I start feeling pain just from reading about other's pain! Then if I read about how it gets worse or the horrible things that can happen to me I get so depressed that I just wind up crying and have to stop reading.
> To top it all off the last week or so I've been having weird feelings in my hands and have been worried that I might get neuropathy there too. I had something like this before but it seemed to go away so I am praying that this does too. If I got neuropathy in my hands and arms like I have in my legs and feet I don't know what I would do. No way could I live like that. I don't even know how I live like I do now. As if you could call this 'living'.



JerseyGirl -

I hope this doesn't come off sounding like one of those syrupy "buck up - things could be worse' sort of replies - though in some ways, it is.

Although I do share your discomfort and infirmity in many ways, I don't share one thing: your 'tender' years. (And believe me, from my end of the telescope, the 40s seem very tender - they were some of my best years.) It is harder for you than for me because you have so much more life to live. My good years (most of them) are sealed up in memory jars - grandma's preserves on a shelf - for me to savor. They can't be stolen from me by disease, unless it is a dementia. But also, my very best years have been the last 20 or so, for reasons well known on this board.

But, aches and pains, neuropathy, rotator cuff and tendon problems, I had a chance to realize, once again, just how good I still have it. Let me share a bit of old, and current, history.

We spent the week in Duluth, celebrating our 21st 'spiritual' anniversary, celebrating Thanksgiving, and finally, having lunch with an old friend - a friendship of 56 years duration.

I met Don in 1953. I was gung-ho in astronomy. A number of us resurrected a former astronomy club whose focus was a private observatory built in 1905. Don, some 15 years my senior, was a local radio and TV announcer whose sideline was also astronomy. (To me, he seemed like a major celebrity.) 

After a time, we lost track of each other, but 10 years ago, something promped me to track him down. Our friendship, renewed at that time, has continued.

Don lost his wife nearly 20 years ago, but subsequently fell in love with a lady he had known in high school, who had also lost her mate. They are both in their 89th year. Until just a few years ago, they danced every week, so long and so fast that their heels practically glowed.

We see them about once a year now, schedules and infirmities preventing more frequent contact. At lunch today, she was as lively and vivacious as ever. Don, though, has suffered a number of setbacks - physical infirmities, mobility problems, failing strength, and near blindness from macular degeneration. (Amazingly, he still has his radio announcer's voice.) He is very much aware of tthse infirmities, but now he and his old/new gal have made a life commitment to each other. While he has grand memories of the past (which he loves to share) THEY ALSO HAVE DREAMS! OF A FUTURE TOGETHER! 

Mrs Ho Ho and I just sat there, amazed, thrilled, and soaking up life lessons from a master. We, too, have dreams of the future, but will we still have dreams, or a life, when I reach my 89th year, if I do?

I asked Don if he was familiar with Tennyson's version of Ulysses? I posted some comments, and a fragment of that poem, a few years ago on these boards. I promised Don that I would print it out and send it to him.

The last few lines say all that can ever be said about advancing years and failing strength. I quote them here, and invite you to read the rest of that post.

Post title: "though much is taken, much abides..."

"Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield."
__________________


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## SocialbFly (Nov 28, 2009)

I was reading up on neuropathy and i saw that several vitamins are also culprits for problems with neuropathy. Have either of you had your vitamin levels checked?? i eat a pretty darn healthy diet and even i was badly vitamin d deficient...

why do i say that, this mentions Vitamin B1 and Vitamin B12 and also Vitamin C. And as bdog suggested alpha lipoic acid...here is the article...hey, would be worth a look...

http://www.mcvitamins.com/neuropathy.htm

and guess what, i am not a doc either...but hey, Dr Google helped me


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## MizzSnakeBite (Nov 29, 2009)

JerseyGirl07093 said:


> If I got neuropathy in my hands and arms like I have in my legs and feet I don't know what I would do. No way could I live like that. I don't even know how I live like I do now. As if you could call this 'living'.



JerseyGirl,

In addition to having neuropathy in all four limbs (arms and hands in both upper limbs, leg and foot in one leg, and my other leg has it and it is quickly progressing its way to the foot), I have a intractable pain disorder in the _vast_ majority of my body.

You can go on and you will.....it's as simple as that. There will be days where you want to curl up in a ball and die because of the physical pain and the emotional pain of your body not allowing you to do what your mind wants to do. There will also be days of great joy and happiness. _You're_ the one to make the decision on how many days you'll at least _try_ to find something positive or happy, not the other people on pain message boards. I used to read pain message boards and was a member of an online "support" group that specialized in my pain disorder. After reading horror story after horror story of how a doctor screwed up and/or didn't care, how researchers were even more puzzled, and in the case of my pain disorder, seeing death notice after death notice, I left. Because of the nature of my pain disorder, people with it have on average 25 years of life after symptoms set in. As of this coming February, I'll have had it for 15 years....I was 17yrs old when I was in a wreck that caused it. I've been living 24/7 in agony for almost 15 years now.

At any age, living in pain is terrible and it's extremely hard to find the energy and emotional strength to go out there and live; at least to some degree.

My only advice is to find your passion. Try different activities to see what brings out the most happiness in you, even if they seem odd at first. Do that activity on the days that are somewhat tolerable, then you can at least think of your next project on the days you simply cannot.

I'm not going to give you fairy-tales of rainbows and unicorns....it will always be a struggle........but you just go on no matter how hard (and worse) it gets. The only other option is dying....not just physically dying, but spiritually/mentally/emotionally dying. I will promise you this......spiritually/mentally/and emotionally dying are often just as painful, if not more so, then the physical pain. 

It's your decision to decide which road to travel down. You only have one life to live, and I hope you live it well.
Mizz


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## Ho Ho Tai (Jan 20, 2010)

Hello again, fellow tormented-by-night-demons-molesting-your-feet. The thread seems in danger of dying. I think there is much in here of use to others with this problem, who might not be aware of this thread.

The extra bit: Even though my cholesterol has been stable for decades (total around 180) my physician has climbed on the bandwagon of wanting to push it to the 90s. I think they're just doing a numbers game. It isn't cholesterol that does the damage, it's plaque build up in coronary and other arteries, and there isn't that strong a correlation. He also promotes red yeast rice as a safer alternative to the statins. 

OK, but try googling this: [statins neuropathy]. You will find plenty of peer-reviewed articles at major medical websites. I have never taken a statin, so that is not part of my problem, but I'd rather take a chance on eventual coronary issues (which I don't have) than on exacerbating peripheral neuropathy (which I do have.)

Anyone try the wool sox trick?


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## superodalisque (Jan 20, 2010)

i'm down to numbness stiffness and a tight sock feeling on my feet. i do have occassional tingling and a twinge of a shocking sensation every once in a while. but overall i'm painless. the only thing that has really seemed to relieve me is exercise. the more i move the better its gotten. i also take B6 supplements along with my multi vitamins.


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## TraciJo67 (Aug 16, 2010)

I just found this thread.

I have been having difficulties with vitamin deficiencies. I’ve been struggling with iron & B-12 for years, but recent testing determined seriously depleted D reserves as well. Right now, I’m caught in diagnosis hell. I’ve been having a lot of problems with severe muscle cramps in my feet and lower legs, and some increasing incidents that feel like hypoglycemia, but aren’t (testing ruled that, as well as diabetes, out). The cramps don’t feel like the burning pain associated with neuropathy, and my doctor feels that they are likely due to nutritional deficiencies or the excess Vitamin D that I’ve been taking (50,000 IU once per week). For the past few months, I’ve been getting weekly B-12 injections and iron infusions every 6 weeks. They are helping with the low energy problems, but not with the profuse sweating/shaking/confusion that happens at least once a month or the seizing & cramping in my feet and lower legs. A few times, I’ve been out with my 3-year-old son and had to stop and sit down due to an episode or a foot cramp. It is frightening when it happens, because I feel helpless. Neuropathy is one possible diagnosis, which makes sense given the post WLS vitamin and nutritional deficiencies that I’ve experienced. I’ve read that unchecked diabetes is another possible cause. It is very frustrating. My doctor sees a woman who appears well nourished &#8211; I’m at least 15 pounds over my so-called “ideal” weight, and my symptoms are vague and fit some possibilities but don’t fit others. My biggest concern is being out with my son and finding myself severely incapacitated when an episode of weakness and confusion happens. I don’t always get any kind of warning that it is going to happen, although usually I will start sweating and shaking before the mental fog sets in. It wouldn’t be good if it happened while I was driving. 

I am so frustrated. The weekly & monthly injections aren’t fun (especially the infusions, which are outright painful), but I’d feel more optimistic if I knew that they’d work over the long term. At this point, my doctor has advised that I’ll be getting them at least monthly for the rest of my life. We've already gone the injections/infusion until my levels return to normal route. They just crash again as soon as I stop getting them and trying to orally supplement instead. My diet is atrocious, but even 5 years post-WLS, I can’t reliably consume a meal without feeling, at best, uneasy. I’ve been relying on what works for me, knowing that it’s not a viable solution, but when I’m being pulled in 80 different directions between commitments at work and at home, the last thing I feel capable of doing is sitting down to a meal that is probably going to make me sick. Instead, I drink 3-4 Vanilla Lattes per day and force myself to eat a small protein-packed meal for dinner. I’m completely bleached of color, my hair is dry and brittle, I’m tired all the time, and starting to feel scared that things are just going to get worse. The cramps and episodes are extremely unpleasant right now, but manageable. However, we’ve already gotten to a point where I seldom go out alone with my son anymore. I feel bad that my husband has to worry about it, that my son has already learned to stop what he’s doing and sit down quietly while mama waits to “feel better”. Yesterday, we took him to the local zoo and lazy thing that he is, he wanted to be carried. His excuse? “I’m having cramps in my legs, papa.” And of course, I feel bad for myself. Throwing a regular pity party, in fact. 

If anyone would have asked me a few years ago how I felt about having WLS, I’d have voiced a mostly positive experience. It sucked in the first year, but I did lose 150 pounds and my co-morbids were resolved. None of them have returned, either: blood pressure is perfect, sleep apnea is gone, blood sugar is normal. But the long-term consequences of severe nutritional deficiencies &#8211; even while I maintain a weight that makes my doctor look incredulously at me when I tell him that I seldom eat anything &#8211; are proving far worse to deal with. I read about the recent death of another post-WLS board member, and saw that she’d had neuropathy issues that rendered her incapable of walking. I’m so sorry for her, and for her family. My problems are negligible in relation to what she faced, but just unpleasant and agonizing enough that I can feel some empathy for what she must have gone through. 

I wish that I’d never had WLS.


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## MizzSnakeBite (Aug 16, 2010)

TraciJo67 said:


> I just found this thread.
> 
> I have been having difficulties with vitamin deficiencies. Ive been struggling with iron & B-12 for years, but recent testing determined seriously depleted D reserves as well. Right now, Im caught in diagnosis hell. Ive been having a lot of problems with severe muscle cramps in my feet and lower legs, and some increasing incidents that feel like hypoglycemia, but arent (testing ruled that, as well as diabetes, out). The cramps dont feel like the burning pain associated with neuropathy, and my doctor feels that they are likely due to nutritional deficiencies or the excess Vitamin D that Ive been taking (50,000 IU once per week). For the past few months, Ive been getting weekly B-12 injections and iron infusions every 6 weeks. They are helping with the low energy problems, but not with the profuse sweating/shaking/confusion that happens at least once a month or the seizing & cramping in my feet and lower legs. A few times, Ive been out with my 3-year-old son and had to stop and sit down due to an episode or a foot cramp. It is frightening when it happens, because I feel helpless. Neuropathy is one possible diagnosis, which makes sense given the post WLS vitamin and nutritional deficiencies that Ive experienced. Ive read that unchecked diabetes is another possible cause. It is very frustrating. My doctor sees a woman who appears well nourished  Im at least 15 pounds over my so-called ideal weight, and my symptoms are vague and fit some possibilities but dont fit others. My biggest concern is being out with my son and finding myself severely incapacitated when an episode of weakness and confusion happens. I dont always get any kind of warning that it is going to happen, although usually I will start sweating and shaking before the mental fog sets in. It wouldnt be good if it happened while I was driving.
> 
> ...



((((((hugs))))))

Since I haven't had WLS, I have no idea what's normal. Have you talked to the surgeon that preformed your surgery? They might know. 

The doctor you're referring to, is that your pcp, or a specialist? I would ask for a consult for a neurologist because of all your neurological symptoms.

Also, what about drinking something like Ensure for some meal replacements? You would get protein, lots of vitamins and minerals, and it would be easy to take with you. My GI dr recommends it, and uses it herself.

With the lattes, I would steer clear of those for a bit, just to see if removing the caffeine helps some. I know I'm sensitive to it, and feel jittery and odd when I drink coffee.

I completely understand about how you are feeling about the death of the Dims member. When I get death notices about people that have what I have, it's very terrifying.

Good luck, I wish I could have offered some insight or assistance.


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## Cynthia (Aug 20, 2010)

About four years ago, I had a range of neuropathy symptoms  extreme hot/cold sensations, pins and needles, and the feeling that the bones in my feet were breaking. I was prescribed Lyrica, but I hated the side effects and began to search the Web for other answers. 

After reading about the intense debate over nerve regeneration and comparing studies about potentially promising treatments, I tried a combination of Acetyl L-Carnitine, Evening Primrose Oil, and Alpha Lipoic Acid. (I think that I took GLA, too, in the form of Borage Oil.) After taking the supplements for several months, my symptoms began to subside and now I rarely have significant pain. Perhaps different supplements might work for you, but this is to say that there is hope.

Also  a podiatrist recently told me about a new drug on the market that is said to have regenerative effects. Unfortunately, I didnt write down the name, because Im not having problems at this time. Maybe someone else here knows of it.


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## MizzSnakeBite (Aug 21, 2010)

Just a blanket statement .

Be *very* careful taking herbal supplements. I'm personally very pro-alternative treatments, and have had many doctors that are, BUT you really need to check with your doctor, especially if you're taking other medications. They can cause some very nasty reactions, so it's best to check with your doctor about it.

Also, with nerve damage, it takes 1 month to repair 1 inch of the damaged nerve. The catch is that it the "repairs" start at the damaged point, then work their way down. If you have just a damaged part in your elbow, it has to repair itself all the way down your hand; so you're looking at over a year before it *might* be fixed. Of course, there's a chance that the damage is irreversible.

TraciJo, you might ask about a nerve conduction study. They aren't fun, but that might give some insight into what's going on.

With Lyrica..... I'm on the fence about it. It can really help, but has some really bad side-effects. If anyone wants to know my experience with Lyrica and Neurontin, feel free to PM me. The mods might not want it here..


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## olwen (Aug 21, 2010)

MizzSnakeBite said:


> Just a blanket statement .
> 
> Be *very* careful taking herbal supplements. I'm personally very pro-alternative treatments, and have had many doctors that are, BUT you really need to check with your doctor, especially if you're taking other medications. They can cause some very nasty reactions, so it's best to check with your doctor about it.
> 
> ...




I can't think of a reason why we would have any objections to you sharing your experiences, as I'm sure they would be very helpful and appropriate.


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## Cynthia (Aug 22, 2010)

MizzSnakeBite said:


> Just a blanket statement .
> 
> Be *very* careful taking herbal supplements. I'm personally very pro-alternative treatments, and have had many doctors that are, BUT you really need to check with your doctor, especially if you're taking other medications. They can cause some very nasty reactions, so it's best to check with your doctor about it.



Thanks for mentioning that, MizzSnakeBite. I meant to add that I gave a typed list of the supplements to the doctor who was treating me at the time. In spite of the extreme discomfort, my neuropathy was considered mild, according to the EMG/NCS tests that were done, so JerseyGirl certainly may not get similarly positive results. And, yep, of course she should talk with her doctor about supplements first.


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## Ho Ho Tai (Sep 15, 2010)

Fellow neuropaths (well, what are we?)

This article came to my attention just minutes ago. I see nothing in it which restricts the treatment to those with diabetic PN. At least some of us are not diabetic. In my case, the condition has been called, variously, 'idiopathic PN' and 'cryptogenic PN', both terms meaning that they studied the hell out of it and haven't got a clue as to cause (but see my earlier posts in this thread.

Here's the article:

Drug Halts And Can Even Reverse Diabetic Peripheral Neuropathy In Mice


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## Ho Ho Tai (Oct 23, 2010)

Ho Ho Tai said:


> Fellow neuropaths (well, what are we?)
> 
> This article came to my attention just minutes ago. I see nothing in it which restricts the treatment to those with diabetic PN. At least some of us are not diabetic. In my case, the condition has been called, variously, 'idiopathic PN' and 'cryptogenic PN', both terms meaning that they studied the hell out of it and haven't got a clue as to cause (but see my earlier posts in this thread.
> 
> ...



I contacted my neurologist re: this drug. This is his reply.

"Hi [Ho Ho] - I looked at the article and it is hopefully a step in the right direction. It has a long way to go before it may be considered for use in people. Let's hope it works! Dr. S......"


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