Joint/Muscle problems

    • Anonymous
      June 10, 2010 at 1:49 pm

      I am 6 and a half months post mild GBS diagnosis. While some things have improved such as numbness and tingling in arms and legs, new symptoms have come on or things have stayed the same or gotten worse.

      I still have muscle twitches in my arms and legs. I have hypersensitivity in my skin, like if I scratch it, I can feel it 10 minutes later. The fatigue comes and goes. The newest issue is that I have a lot of pain in my muscles from every day activity, and now seem to be developing joint pain. I have a very painful big toe joint, elbows and now fingers. The elbows were there from the beginning. The big toe came and went. I got 2 cortisone injections from a podiatrist and I thought that this was unrelated. Now I am not so sure.

      I went to a rheumatologist recently, but forgot to mention the toe to her or point it out because we were in a rush. I asked if I have Rheumatoid Arthritis, Lupus, etc. She said that based on my bloodwork and exam, it did not appear to be this, but to come back in 6 months. No meds, nothing. I am going to try to find another one because I called her and she did not call back until 2 weeks later!!

      So now I am wondering if I have RA, gout, lupus, (hair still falling out), myalgic encephalomyelitis, fibro, CFS….the list is endless. All I know is that I had no problems before the vaccine, and now I am in chronic pain. I am in a bit if a despair about this too, crying often again. Over the counter meds do not work, I can’t take cymbalta, not sure if gabapentin would work for these issues.

      Has anyone had muscle/joint issues subsequent to getting GBS? Acquire another autoimmune disease? Have any recommendations for pain meds that I can ask for? I am kind of paralyzed as to what to do. I have an appt with a neuro on 7/2 and am going to try to find another rheumatologist. I have not been able to find a dr who is willing to work with me and to try to figure this out. Any advice on how to deal with docs?

    • April 11, 2011 at 10:54 am

      Maybe you don’t have GBS but CIDP? That is the chronic form of GBS. I had problems with the flu vaccine back in November 2010. I got the vaccine on November 5 and about 10 days after the vaccine I noticed I had a numb feeling in my right foot. No other symptoms, just a weird numb or tingling feeling in my foot. It did not progress but stayed the same. I saw my GP and she did not know what it was so I went to a neurologist. She did a EMG and NCS (electromyelogram and nerve conduction study) on my legs. It showed slowing of my nerve conduction. She said this is usually caused by demyelination of the myelin sheath. So she did a MRI and nothing showed up for MS leisions. She did a whole batch of blood tests…negative for everything, all other auto immune diseases, lymes, metals in my blood, but my protein level for something was elevated. So next we did a lumbar puncture and I had elevated protein in my spine fluid. She said it was probably CIDP and we started IVIG treatment. It was 5 monts from onset to my first IVIG treatment. I have very mild symptoms such as the same numbness in my legs and now I have some muscle aches like charlie horses in my calves (worse when I walk or over do it), shaking if my hands and a very mild weakness in my hands. I only notice the weakness if I use my hands for something for a long time. I need to rest them. I would see a neurologist and ask about CIDP for sure.

    • Anonymous
      April 11, 2011 at 11:36 am

      Thanks ChirpyBirdy. I was worried about CIDP for a long time. I saw 6 neuros though between Nov 09 to July 2010 and none of them diagnosed this. None of them did a spinal tap either. Any numbness that I have is intermittent and mostly when I am sleeping, it has not been progressive. Also, I have not had weakness as a main issue. One of the neuros told me I was ready to go work out!! So far, no CIDP diagnosis, but thanks for giving some advice. Right now, I have a diagnoses of P.O.T.S./inflammatory arthritis and fibro, but frankly, nobody knows what it is and I still suffer on a daily basis. I hope you have better luck.