# May is MS Month



## Surlysomething (May 4, 2015)

Join the fight to end MS!


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## MsBrightside (May 15, 2015)

Glad to see you're always raising awareness and encouraging support for MS treatment/research.

I think I've mentioned this before, but it happened again a few weeks ago:


> The BP MS 150 is a two-day fundraising bike ride organized by the National MS Society. The ride is the largest event of its kind in North America with 13,000 cyclists, 3,500 volunteers and countless spectators along the route and at the finish line in Austin. The 2014 BP MS 150 set a new fundraising milestone by raising $20 million dollars, bringing hope to many who are living with multiple sclerosis.
> 
> The two-day ride is a 180-mile journey that starts in Houston and ends in Austin.


 
A working mom of 3 that I know rides in it every year (she's an iron woman!), and I just found out a couple of male friends rode in it this year again. One of them rides in honor of another mutual acquaintance and terrific mom of 3 who happens to have MS, too. As you know, so many people are dealing with this; and others may not even realize it.


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## Shosh (May 15, 2015)

Surlysomething said:


> Join the fight to end MS!


 
How have you been doing with it?  I hope well.

I am doing well.

I came off Tysabri the IV infused drug after being on it for 6 years, and years of injections before that.

I am now on the twice daily oral drug Tecfidera.

We shall see how well that works for me.


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## Surlysomething (May 15, 2015)

Thanks!

It can be a very invisible disease and a lot of people don't know much about it, still. I try and give a bit of knowledge to people I know so they're aware of what's going on with me and how I might feel if they see me.


And that's really great about your friends. I don't know anyone that goes in the races but i'm sure somewhere down the road I will.

T. 



MsBrightside said:


> Glad to see you're always raising awareness and encouraging support for MS treatment/research.
> 
> I think I've mentioned this before, but it happened again a few weeks ago:
> 
> ...


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## Surlysomething (May 15, 2015)

I'm so glad you're doing well. I can't imagine living somewhere so hot and having MS. I would be a hermit. 

I'm doing ok. Still working and I finally moved to a place that's MUCH easier for my mobility and lifestyle and close to family when I need help so that's been a big deal. There's not a lot of treatment out there for primary progressing MS though, unfortunately. I take Baclofen occasionally and I take Vitamin D daily, but that's about it. I use a cane now which is so helpful and I have a walker in case i'm having a terrible day or have to go a distance.


Crazy disease!



Shosh said:


> How have you been doing with it?  I hope well.
> 
> I am doing well.
> 
> ...


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## Shosh (May 17, 2015)

Surlysomething said:


> I'm so glad you're doing well. I can't imagine living somewhere so hot and having MS. I would be a hermit.
> 
> I'm doing ok. Still working and I finally moved to a place that's MUCH easier for my mobility and lifestyle and close to family when I need help so that's been a big deal. There's not a lot of treatment out there for primary progressing MS though, unfortunately. I take Baclofen occasionally and I take Vitamin D daily, but that's about it. I use a cane now which is so helpful and I have a walker in case i'm having a terrible day or have to go a distance.
> 
> ...


 
Wow sorry, I did not know you had PPMS.
I was thinking you had RRMS.

It is very important to live in a home that is disability friendly.
Stairs are a no no in a house for people with MS.
Make use of all of your mobility aids as they will make life a lot easier.

Hugs


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## cinnamitch (May 18, 2015)

Surlysomething said:


> I'm so glad you're doing well. I can't imagine living somewhere so hot and having MS. I would be a hermit.
> 
> I'm doing ok. Still working and I finally moved to a place that's MUCH easier for my mobility and lifestyle and close to family when I need help so that's been a big deal. There's not a lot of treatment out there for primary progressing MS though, unfortunately. I take Baclofen occasionally and I take Vitamin D daily, but that's about it. I use a cane now which is so helpful and I have a walker in case i'm having a terrible day or have to go a distance.
> 
> ...



Do you have a doctor who specializes in MS? From what I have seen, that makes a world of difference in getting the care you need. They just keep up on all the new info so much better than a regular doc does.


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## Surlysomething (May 18, 2015)

Sorry, I rarely talk with other people about MS so I didn't think to mention what type. I moved into a singe story coach house now and it couldn't be more perfect. It's changed my life.





Shosh said:


> Wow sorry, I did not know you had PPMS.
> I was thinking you had RRMS.
> 
> It is very important to live in a home that is disability friendly.
> ...


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## Surlysomething (May 18, 2015)

I go to the newly built Brain Health Centre at the University and have a great neurologist and a team of specialists if i need any help with specific symptoms or issues (human resources) etc. 



cinnamitch said:


> Do you have a doctor who specializes in MS? From what I have seen, that makes a world of difference in getting the care you need. They just keep up on all the new info so much better than a regular doc does.


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## cinnamitch (May 18, 2015)

Surlysomething said:


> I go to the newly built Brain Health Centre at the University and have a great neurologist and a team of specialists if i need any help with specific symptoms or issues (human resources) etc.



Good, that's what you need is professionals who deal with this.


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## Surlysomething (May 19, 2015)

Unfortunately there's not a lot they can do about primary progressing. 





cinnamitch said:


> Good, that's what you need is professionals who deal with this.


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## Shosh (May 19, 2015)

Surlysomething said:


> Unfortunately there's not a lot they can do about primary progressing.


 
So they have definitely diagnosed you as PPMS?


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## one2one (May 26, 2015)

I think the spoon theory is helpful as a way of understanding or trying to explain to someone else how difficult something like MS can be.


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## Surlysomething (May 27, 2015)

The Spoon Theory is great! I've sent it to a few people since I was diagnosed.

Thanks for mentioning it!



one2one said:


> I think the spoon theory is helpful as a way of understanding or trying to explain to someone else how difficult something like MS can be.


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## Surlysomething (May 27, 2015)

World MS Day - May 27, 2015

#strongerthanms


A few facts:


Experts recognize 4 courses of MS: progressive-relapsing, secondary-progressive, primary-progressive, and relapsing-remitting.

Of those diagnosed with MS, progressive-relapsing affects about 5% of people, about 10% are diagnosed with primary-progressive, about 85% are diagnosed with relapsing-remitting initially, and about 50% of people with relapsing-remitting develop secondary-progressive within 10 years of diagnosis.

There is greater prevalence of MS in higher northern and southern latitudes.

MS is much more common in females than males.

MS is most commonly diagnosed in people between the ages of 20 and 50 years.

The lifespan of a person with MS is just about as long as the lifespan of a person without the condition.

While much effort and research has gone into finding out what causes MS, there are still no clear answers.

In MS, a person’s immune system attacks the central nervous system, causing inflammation that damages myelin, the fatty coating that insulates 
and protects nerve fibers.

To understand the central nervous system, it’s easiest to picture the nervous system as a tree. The CNS is the tree’s roots and truck.

Out of the approximately 400,000 people who live with MS in the US, about 8,000 to 10,000 are children or adolescents.

Fatigue is the most common and potentially most disabling symptom, affecting between 75% and 90% of people who have MS.

Numbness or tingling are common symptoms and the result of damage to nerves that transmit sensations from body surfaces to the brain.

A relapse is when new symptoms or worsening of symptoms that persist for at least 24 hours and occur at least 30 days since a previous relapse.

During a relapse, immune cells that normally circulate harmlessly in your blood stream attack and breakdown the blood-brain barrier.

While there is no cure for relapses, treatment may help in speeding up recovery time.

Magnetic resonance imaging (MRI) is an important tool used for diagnosing MS and monitoring disease progression.

MRI scans reveal abnormalities in the majority (90% to 95%) of people with MS.

Radiologists and neurologists will use MRIs to look for evidence of new damage, primarily lesions, and evidence of chronic damage to the CNS.

Disease-modifying treatments (DMTs) have been shown to be effective in decreasing the frequency of relapses or exacerbations.

DMTs are given either orally or by injection or IV.

While DMTs are effective in the majority of cases of MS, they have not proven to be effective in cases of primary-progressive MS.

People with MS may experience emotional problems, such as depression, anxiety, mood swings, pseudobulbar affect (PBA), and stress.

Clinically significant depression affects up to 50% of people with multiple sclerosis over the course of their lifetime.

No specific diet has been scientifically proven to slow progression. Specialists promote the same low fat, high fiber diet recommended for all adults.

Stress is a trigger for MS. It comes in many shapes and sizes from emotional and physical, to the stress on the body by extremes in temperature.

Regular exercise, including exercises for strengthening, stretching, and coordination and balance, can be useful in managing many common MS symptoms.

Scientists still have a lot to learn about the immune system and autoimmune diseases, but they do know it plays a role in the development of MS


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