I have demyelinating neuropathy but not sure why.

    • Anonymous
      December 21, 2011 at 3:35 pm

      Hi guys I have been hanging around the site for awhile now and I wanted to post my story and ask some questions. It is kind of long but I wanted to make sure to paint a full picture of what’s going on.

      Around the first of the year I was doing squats with a bet to much weight and I ended up tearing the meniscus cartilage in my right knee not horrible but to the point that I needed to stop working out for a while. My right leg has never been quit the same after that. I can’t do leg extensions without my right leg shacking like there is a earth quack but with rehab it has been getting better but it is safe to say I have lost a lot of strength in it after I hurt my knee.

      The problem that brought me here started about the same time I got the MRI for my knee that would be on 3-31-11. My right leg would twitch every once in a while. At first I figure it was related to rehab and my knee injury. But it just got worse and worst till now pretty much my whole body has some twitching. It is worse in my arms and legs but I have it in my back some times. The only other symptoms I have had is that my left hand feels stiff sometimes. I have had one really bad cramp in my right calf and it went away pretty fast after a bent my foot. The twitching is only when my muscles are at rest as far as I can tell. Last it seems stress make it worse and a good night sleep seems to help some.

      The Doctor is not sure what is causing it but he says I have demyelinating neuropathy. He ran electromyography (EMG) and nerve conduction study (NCS) on my right quadriceps, calf and tricep. Then about 19 blood test that all came back normal. So now I am on prednisone 20 mg a day ” started it on 11-10-11″ and it really has not been helping. When I went to the doctor it was just my right side and sometimes my left that had twitching now both sides are having twitching about the same amount. The only good news I have is that I can still work out and I am lifting more weight then I was before I saw the doctor.

      I read about ALS and that seems to fit my twitching symptoms more than CPID but I don’t have any lose of strength yet other then my right leg and I am not sure if that is from the demyelinating neuropathy or knee problem. My right leg is getting stronger. From what I read it’s not likely to be ALS. I really hope it’s not, just reading about it and what happens to you really does not make my day at all.

      I am lucky at least right now I don’t have any of the really bad symptoms like foot drop, pain, or weakness.

      I was wondering if anyone else had symptoms like mine and you were told you have CPID or GBS ? I am going to see my doctor on the 28th since I am not getting any better and I wanted to ask him some more questions since I have learned a lot from all the reading I have been doing. Do any of you guys have any suggestions for questions or test I should ask him about ? I wanted also like to know if anyone knows a good doctor in the Taxes DFW area that has dealt with this kind of problem before. I just went to the Nero my GP sent me to after reading about this I think I may want to find someone more experienced.

      Thanks for all the help

    • Anonymous
      December 21, 2011 at 6:42 pm

      A couple of things…

      The GBS/CIDP Foundation has a list of Centers of Excellence (those that best treat GBS/CIDP) on the main page. I believe there is one in Houston.

      20 mg’s of Prednisone really isn’t much so I’m not surprised you haven’t seen an improvement. You would need many times more than that, I’m guessing, before you see improvement.


    • Anonymous
      December 21, 2011 at 10:19 pm

      Hi Jast,
      Have doctors discussed Benign Fasciculation Syndrome as a possibility? From what you are describing, it sounds a possibilityand BFS seems somewhat common in those who work out and lift weights. “The main symptom of benign fasciculation syndrome usually is focal or widespread involuntary muscle activity (twitching). In addition to the twitching, some sufferers experience pain, generalized fatigue, exercise intolerance, globus sensations, muscle cramping,[1] and/or paraesthesias.[2][3]”

    • Anonymous
      December 28, 2011 at 4:12 pm

      Hey guys thanks for all the info.
      I went to see my doctor today and filled him in about what had been going on for the past few weeks. He seems pleased at the fact that I am getting stronger and is taking that as a sign that the drugs are working.

      I asked him about ALS,BFS,and CIDP. He told me he does not think I have ALS I don’t have the sings but he thinks I have CIDP of course his is not sure. I asked him why my does of prednisone was so low. He told me that he usually find that if 60 mg work 20 will usually work just as well. And with all the side effects I want to be on the lowest effective dose.

      This past week has been much better than the last since I stopped worrying so much about what’s wrong we me. I still have the tremors but not as much or maybe I just don’t notice them since I am not worrying about it. I guess as long as I don’t have any big drop in my strength then I will just stay on the drug and see him in 3 months.

      Does stress make CIDP worse for some of people I read about BFS and it seems like stress will make the problem universally worse for any one that suffer from it?

      Like allways any help or advice is welcome.