probably a dumb question!

[doublevision1]

What was the first thing to pop into your head when you were diagnosed?  I thought, great, I'm going to end up in a wheelchair.   I think a lot of people may also think the same thing.  

Then I did tons of reading and learned that many with MS don't end up in wheelchairs and that the numbers should decrease if the DMD's actually do what we are hoping they do in terms of slowing progression.  The drugs are fairly new, so the long long term evidence is not there yet.  But that's the hope.  

Here's the dumb question, does anyone know which symptom it is that most often causes MS patients to lose their mobility to the degree that they require a wheelchair?  Is it muscle weakness, pain in the lower extremities, fatigue, loss of balance or coordination, all of the above, and/or something else?  I always assumed it was muscle weakness/paralysis if you will, but a friend's mother has so much neuropathic in her feet from MS she can barely stand on them.  It hadn't occured to me that this might be severe enough in MS as to put someone in a wheelchair.  Is there anyone here who can speak to this from personal experience?

[deborah0904]

I meant to say that my first thought when being diagnosed was "Finally, someone knows what is causing my many problems."  I was totally relieved.  

today, I got to hold my great niece who weighs only 5 pounds.  It was very painful and difficult to hold her due to the weakness in my arms and that has made me very sad.  I'm just glad to know what is wrong with me and am now excited to see what the Dr.'s can do to help me.  

[deborah0904]

I have a lesion on my spinal cord that has caused me to have to use a wheelchair when I have to go to the grocery store or if any activity requires walking for any distance.

[Siddy1]

Add balance to the list

My loss of mobility is due to terrible balance problems causing several bad falls already.  Add  extreme weakness in my left leg. I have a mobility chair ready for when I finally give in.

My first reaction to the dx was relief that it was finally something -  but later, after reasearching MS,  I was not so relieved.

[saveone]

Although I am not yet dx with MS on a "demylinating disease" my first thought when told my MRI was indicative of MS was "nothing".  My brain went silent.  Then my first question to the doc was what is the worst case scenario?  2nd question, how long between dx and outcome.  His worse case scenario was death.  I came home and hit the internet.  I was much relieved to find death is a rare outcome.

[greenandchic]

I'm definitely dealing with  spasticity right now (what jensequitur wrote) even as I type and that scares me to death.  

[Rena705]

Back in 1993 there wasn't a lot of information floating around about MS like there is now...my Mom says my first response was "does that mean I won't be able to drive anymore?"!!  It was a very important thing at the time but I was also convinced that I would be in a wheelchair within months and being that I had Dr. W. at the time he did very little to make me feel that there was any hope at that time.  Gee..he was a jerk then too...oh my how times haven't changed in his life!

Well I am walking with a cane due to lack of equilibrium, I am on permanent disability insurance, I just finished what I would say was my worst experience with steroids BUT I can still walk, talk and think for myself so I would say I am doing pretty darn good despite the pain.

Good question honey!

Lots of Hugs,
Rena

[jensequitur]

I'm not in a wheelchair, and I get around okay, so no personal experience to speak of...  But what I've heard is that there's three main reasons why people have trouble walking.  

1) Spasticity
2) Numbness/paresthesia
3) Muscle weakness/loss of muscle control

I have some numbness and lack of proprioperception in my legs, but it hasn't affected me too much.  What's been most difficult to deal with is the muscle weakness in my right leg.

[sllowe]

I asked my Dr. the "dumb" question when he mentioned MS.  I said, well, why MS? ALL my labs came back good and my immune system is FINE....lol

Can't speak to the immobility personally, but any one of these symptoms at their worse, can leave you bound to assistance,etc....

[spitfire989]

Well, I can say this when I got my Dx from the Dr, I'd have to say my 1st thought/reaction was EXTREMELY similar to Ralphie in the "Christmas Story" when he was helping his dad with the tire change and he knocked the lug nuts all over---and his only reaction was----OH FUUUUDGE!   Actually, when I went to my primary for the symptoms I was having at the time----MS was the farthest from my mind.  And when he wanted me to get right in for an MRI, I thought, "Oh sure, Ok, yeah doc, whatever ya want.  Still not putting 2 and 2 together.:(   -----Boy, have I learned alot since then! And to think I worked for years in the medical field.:(   :)   But, I will say this, (and I'll only say not everyone is gonna be like me with my symptoms)----but I have certainly taken a quick change for the, I don't wanna say worse---but I will say for the new adjustments.----I have had alot of issues with my legs, balance, memory, urinary/bowel changes, I guess the gammet of the MS world.---BUT--I know I have an exceptional Neuro and he's very very in-tuned to what's going on in this crazy ol' body:)---but, just the same--I hope everyone can find releif or what their looking for. :)

[greenandchic]

Since I was suspecting MS for at least three months before I was diagnosed, I had already done some research.  I thought, "wow! MS is not so bad" when I was first Dx.  Then the symptoms got really bad.  I have a large amount of lesions they are are affecting my balance, speech at times, my legs now "give out", etc - this is all since I was Dx a few weeks ago.  Its not the walk in the park MW makes it out to be - at least thats how I perceive it.  

[mae1]

First thing to come to my mind is "They have made a terrible mistake" it took me months to wrap my mind around the idea I had MS...
April

[rendean]

I'm new to this forum but I have yet to see you post a "dumb question". You ask intelligent, thought-provoking questions that benefit the entire forum.

As for neuropathic pain severe enough to disable one to use a wheelchair, I could certainly envision it. I have had several severe, albeit short lived, bouts of neuropathic pain in my feet and legs. Walking was not an option for about 5 days. I, however, would have thought, like you, that MS patients become wheelchair bound due to weakness/paralysis.

Interesting question. Looking forward to what others have to say. Keep up with the great questions!

Rendean

[Lulu54]

Wow DV, That is an excellent question  I can see how there could be more than one reason why MS would cause us to go to a wheelchair... it should be interesting to read the responses.  

Lu