Living With M.S.


This popped up in "On This Day" on my personal Facebook page today. I posted this two years ago, and thought I would share on my blog for anyone going through similar issues! As of this moment, I have gone four years without a relapse of new symptoms. That's the longest I've ever gone since Multiple Sclerosis hit me in late 2002! The residual damage from previous relapses will always be there, and occasionally flares up. It can be as simple as my feet burning or as extreme as full body burning and buzzing and bad fatigue that puts me in the bed for a day or two. 


From 2016:

This poor woman! I saw in her comments that she stopped breathing once, too. THAT is my biggest fear: paralysis of the diaphragm.  That is one of the few symptoms I haven't had with M.S.       

 I think  people often think M.S. is "the wheelchair disease." If you aren't in a  wheelchair, then you must be doing fine. But that's just one of many outcomes possible with M.S. Every person experiences it differently,  with a wide range of possible symptoms. 

 M.S. has affected my autonomic nervous system, causing heart rate and blood pressure issues. It has  affected my bowel, bladder, caused minor spasms, foot drop (which caused  problems walking and even kept me from being able to drive), unsteady  gait, unsteady balance & optic neuritis (multiple times). Plus sensory symptoms like  numbness, burning (hot and cold), buzzing, pins and needles, shocks- like Lhermitte’s sign (an electric-shock-sensation that some people get when they bend their head forward), cognitive issues (including  memory loss), & dizziness.     

I have had relapses that caused so much pain or fatigue that they put me in bed for short periods of time. In 2008, I was hit with numbness in my hands so bad that I could hardly use them for several days. I couldn't work, and didn't even have the strength to take a shower for a few days or even get out of bed. My husband had to do everything for me. 

 I have felt like the blood in my veins was "on fire," along with other crazy sensory symptoms that you just cannot explain to someone who has never felt them. 

 I have been very lucky so far, because steroid infusions have cleared up most of my major symptoms during relapses, although a few remain and flare up from time to time, such as cognitive  issues, burning, aching & fatigue.  

 You never know how you're going to feel from day to day. You never know when an  exacerbation is going to hit you. I'm just thankful I'm doing as well as I am, at this moment, after all these years. Some folks are going through so much worse than what I've been through!

 

Here are some great resources:

This is a website I've gone to many times to look for shared experiences and find out what other people have done to deal with particular issues. Or, just to know if anyone has gone through some of the same issues!

This is the official website of The National Multiple Sclerosis Society. TONS of great info. The link will take you to a list of common and less common symptoms of M.S.

Tawny

Tawny

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