• Anonymous
      July 3, 2007 at 10:04 am

      Hi All: Took a sabbatical from the forum for six weeks while I struggle with the pain in my knees and hip. After going through a diagnosis of gout, and bursitis, all are now rejected and we are back to the possibility that it is residual related. As for my hip, I have terrible pain in my right thigh which usually is a result of hip problems. Now, here is the kicker, so to speak, my paralysis began in my thighs. I never had tingling sensations or numbness in hands or feet, just paralysis that began in my thighs and worked its way down to my feet. So I suspect the pain in my thighs is a residual, though I never had it before a month or so ago. My doc wants me to have a mri and to go see an physiatrist, who specializes in pain control and working with incurable problems. This one guy has specialized in post polio patients and my doc thinks I may be in post gbs since my pain has gotten worse as has my endurance. My question to you all is first, have any of you had residual problems with knees? Pain in the thighs? And have any of you ever worked with a physiatrist?
      I am fairly sure I don’t need an mri and that I am dealing with worsening residuals, which has gotten me down lately. I have had chronic pain since getting sick and now the pain has gotten worse, it is hard to deal with. I hate to come back here just to whine but where else can I go? Jeff

    • Anonymous
      July 3, 2007 at 11:15 am

      Jeff, whine all you want and need!!!! I have bad knee problems also. I have had surgeries on both of them-actually thats where we think all my problems started-infection from knee surgery. an mri might show them that there might be an unusal amount of swelling or fluid in the knee joint-it won’t do anything for the pain, treatment or much of anything in the long run. I have had many mris done on my knees, they all showed something different-or were interpretted differently. My physiatrist sent me to aqua therapy, which I just finished up last week. It has helped quite abit, now if I could only get my pool as warm as that one. I actually got down on my knees last weekend-something I haven’t been able to do in over 6 years. It was for only a moment but I did it. Have you gone to an ortho for your hip and knees? Has your back been checked lately?
      About 6 years ago I was in a car accident where my right knee hit the dashboard, that in turn messed up my hip by pushing it up and back. In turn that also did damage to my lower back. The er that checked me didn’t do any xrays other then on my knee-my D.O. found the hip and back damage. Since my first knee surgery, my muscles atrophied on the one leg and has caused more problems. My aqua therapy has helped both legs and now the muscles have stopped atrophying at the rate they were going before the therapy-goal was accomplished in just a few months. I think the trick was keeping my therapy sessions to only 2 a week and trying to keep my daily life under control and not over doing things and getting enough rest after exercising. I did find that if I didn’t rest after doing things, I ended up in alot more pain in my lower back, hips and legs. The cramps told me to rest more, when I listened they would go away until I did too much again and the circle continues. I hope you can get answers to your knee/hip problems. My physiatrist has other gbs/cidp patients, but none that were like me-he said I was Special and unique. For the last few weeks I have been able to walk, for the most part, without the use of my cane. I can tell if I have over done it by the fact that I can’t walk a sidewalk without going into the grass every other step, then I know its time for the cane. Take care.

    • Anonymous
      July 3, 2007 at 6:56 pm

      Jeff I’m so sorry to hear about the problems you have been experiencing.

      I worked with a physiatrist during the acute recovery phase of my GBS. It was a great experience and really helped me. Mainly he was able to direct the various therapists and other specialists to help me recover, and acted as my advocte with my insurance issue.

      Best wishes, and I hope you have as good an experience as I did.


    • Anonymous
      July 3, 2007 at 9:37 pm


      a physiatrist is the way to go. RU on neurontin, amitriptiline, or similar for your pain? i assume they have done successive NCVs to confirm you are not cidp or recurring gbs. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 4, 2007 at 8:28 am

      Hi Gene and All: Thanks for your input. I could never get any one to give me the NCV once out of the hospital. That is one thing I will push for now, just so I know if no other reason. My primary care doc told me the neurologist told her I might have CIDP but he won’t see me again as he told me there was no more he could do, so who am I to believe? I always had luck with doctors, or so I thought, but hearing what they say to each other make me angry. I don’t hink I have CIDP as my reflexes are still present, if not normal, but I think I have gotten worse, so once I see the new doctor I will see about an NCV. Jeff

    • Anonymous
      July 6, 2007 at 2:07 pm

      Hi Jeff,

      I’ve been a little slow here too. Life can keep us too occupied…

      I too have pain in my thighs. I really notice it when I get in bed at night. I sit up to watch TV and start taking my nighttime meds and sometimes put a heating pad on my thighs. They really hurt.

      I just went through some tests with a new neuro and all I discovered is that I am $1,000 broker. It is so disappointing, but very common here that we have a hard time finding a doctor that will work with us.

      From what has been posted here lately, having reflexes or not does not seem to be an indicator of anything. I no longer have reflexes – even after 10 years and had a mild case of GBS (not hospitalized or vented).

      Wish you luck!