Friday, August 22, 2014

Friday, February 24, 2012 Cheryl Krueger, Community Member, asks

Q: Question regarding leg pain and mobility

Hi:

I was diagnosed with MS almost 3 years ago.  I live in Nebraska where there aren't too many neurologists.  My neurologist is not very helpful with any questions I have ever had.  He discounts any symptoms I ask him about as my MRI's have been stable and only showed two brain lesions (I also have one in my neck and two markers in my spinal fluid).  I believe his basic treatment is good.  I am on Copaxone and it has been a very good medication for me. But as I say my neuro does not seem to think I should have any problems as only a few brain lesions show up on the MRI. 

 

I initially went to my MD as I had severe trigiminal neuralgia.  I also had many areas of numbness in my head, arms, and right leg and cognitive issues where I can't remember things, think of words, sometimes put together a sentence. Steriod infusions helped greatly with the numbness although I do have numbness off and on.  

 

I have had psoriatic arthritis with psoriasis since I was about 6 years old and since IBS and anxiety attacks for years.  So I am used to ignoring or pushing through the pain.  MS doesn't seem to respond well to that for me. 

 

My questions are: I have a terrible time with leg pain, shooting pains, numbness that comes and goes.  I am 48 years old and am trying to stay in shape.  My legs do not cooperate.  I can't walk near as fast as I used to.  I am uncoordinated also so I have to be careful not to fall - which I tend to do alot.  I also have shooting pains in my legs whether I am walking or at rest.  My legs seem to not only have severe pain but mobility issues after travel and I have terrible fatigue and often dizziness. I stay fairly active by walking our dog 2 x a day and doing housework and yard work.  This winter I tried to bump up my exercise routine a little by adding some swimming while visiting relatives and walking on a treadmill.  I could do the swimming but after trying to add other activities my legs turned to jelly and i could not walk the dog or go swimming for several days due to leg weakness and immobility.  Pre-MS when I overdid I might have had some muscle pain after a big workout but now I can't accomplish typical stregnth building exercises without some scary consequenses.  Has anyone else experienced this?  I also have terrible cognitive difficulties. Today is very bad cognitively which is why it has taken me an hour to write thisout.  My neuro told me it might be medication related but I don't think so as some days are much worse then others and my meds are consistently the same each day.  I guess I am wondering if anyone else has experienced any of these symptoms?  This winter I really was scared for the first time because although I suffer with a lot of pain and stiffness in my legs - after traveling to Texas I had trouble just doing regular walking for several days and the last two months I feel like my legs are heavy and just can't build up any speed walking or do anything to exercise more then a simple dog walk. Since I have been writing this I now have one numb leg, two numb feet and part of my butt and lower back are numb. LOL. It is a very interesting disease.  Any comments or thoughts would be very appreciated.  Thanks.   

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Answers (2)
Lisa Emrich, Health Guide
3/13/12 10:57am

Hi Cheryl,

 

I'm sorry to hear that your neurologist basically thinks that you should be not having problems because you have so few MS lesions.  One important thing which my neurologist stresses is that lesions and symptoms DO NOT often correlate.

 

My legs behalf very similarly to what you describe.  It is important to pace yourself and try to rest just before fatigue sets in.  It's not easy to find where that point is sometimes, but it can help you to keep going longer.  For me, if I begin to overheat, my legs will quickly become jello.  Sometimes the faster I walk, the heavier they become.

 

But it is great that you are staying active.  Avoid deconditioning.  When working on weight machines, try less weight and more rest between short reps.  Ask for a referral to a physical therapist who specializes in neurological disorders for specialized advice and guidance.  (Please do not try anything new based on what I say as I'm not a medical professional.)  Stay safe!!

 

Regarding the pain, there are medications which help.  I use a medication called gabapentin (the generic for Neurontin) to lessen nerve pain.  Talk with your neurologist about strategies to lessen the pain and numbness you feel.

 

If you don't see an MS specialist, you should consider doing so.  Contact your local chapter of the National MS Society to ask for recommendations.  I looked in the MS Center directory maintained by the Consortium of MS Centers and found that the MS Center at the University of Nebraska Medical Center in Omaha (402-559-7857) seems to be the only member center in the state.

 

I'm very glad to hear that Copaxone seems to be working for you.  That's excellent!

 

 

 

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Vicki, Health Guide
3/19/12 8:45am

Hi Cheryl,

I have always thought this is an interesting disease, but sometimes I tire of learning. Then there are times I just don't like what I learn. Bummer.

 

I am so sorry you have trigeminal neuralgia (TN). Just as my MS symptoms began to level off on a manageable plateau, TN attacked and hasn't left me alone for long since.

 

Enough chit chat. Now to the questions.

 

You talk about pain. I wrote a series of articles on pain that may be of help. Like Lisa said, I am not a doctor either. Here is my personal experience --

 

Since you have trouble with coordination and walking fast, please be careful when you were walking long distances. For those of us with MS, long distances may be as short as 20 yards. You can tell how far you can walk without problems. Whenever you know you will walk that far, you may want to take extra precautions. For you that could be as simple as a cane or it could be a wheelchair.you may need the mobility aids only when you walk for distances.Maybe a harness would provide more stability than I leash when you walk your dog. When you're home, walk freely and do your exercises to strengthen your legs.

 

Your added exercise of swimming sounds great. I have never had the jelly effect when swimming, but I certainly have when walking.When you travel, repositioning your feet and legs every once a while, and maybe reach downand kind of massages your calf.That helps during long car rides were crowded airplane rides.

 

I have had cognitive difficulties, but usually during a medication change or time when I am overheated. However, I have found a medication I have taken for a while suddenly does not work anymore. You are working to keep your legs strong but you might want to try some memory exercises or games like crosswords or trivia to keep your mind in shape, too.

 

I hope some of this helped. Please let us know how you are feeling. Good luck. 

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By Cheryl Krueger, Community Member— Last Modified: 03/19/12, First Published: 02/24/12