New with questions

    • July 17, 2015 at 3:49 pm

      Hi my name is John and I Am
      in 3rd month of “recovery” I was not ventilated, my symptoms were same, tingly hands feet, neck pain (base of skull) I also had or have bells palsy. Concern now is lack of strength in legs still, I was in in patient rehab (acute) for 21 days and am currently in a out patient 3x/week. I understand everyone is different but from what I am seeing is are people progressing rapidly? Frustration is an everyday normal now, but I am interested in recovery time, is there a certain feeling prior to the ultimate recovery of standing and walking? Did the numbness subside during or after standing or walking?

    • GH
      July 17, 2015 at 6:04 pm

      It isn’t cut and dried. There is a great deal of variation in the severity of these disorders, and in the time and degree of recovery. Generally, recovery will reach maximun in one to three years, and recovery may be incomplete. Your description of your case is incomplete, but it seems to have been a mild one. Frustration is normal, because recovery is always slower than one wants. The thing to do is to stick with your rehab plan and take it as it comes.

    • July 17, 2015 at 6:42 pm

      Thank you for response,yes I have been told as mild however unable to stand or walk for 3 months isn’t mild to me. My Neuro still had not reviewed nerve test with me yet just says severe Axon and Milyn damage. Numbness and tingly is still severe wondering if that every goes away.

    • GH
      July 18, 2015 at 2:18 am

      Myelin damage heals relatively quickly and well, assuming the autoimmune response is stopped. Axonal damage takes much longer and is more likely to be incompletely healed. I was quadriplegic for a few weeks and paraplegic for a few months. After about a year and a half, I could walk without my cane, but I still have weak legs four years out of the hospital. I have somewhat wobbly knees and constant foot pain (burning and tingling sensations). I expect these are permanent residuals. As I was almost completely paralyzed for a time, I consider this a good recovery.

      By the way, I am classified as CIDP, but in some respects my case was more like GBS.

    • July 18, 2015 at 2:18 pm

      How did they determine between gbs and cipd? That is my concern is I have cipd due to timing of on set. I didn’t get paralyzed over night but over a course of weeks after first IVIG, I also caught within 2 days of getting started IVIG 3rd day. My symptoms worsened after IVIG had too wait a month to get plasma exchange. Thanks for the conversation too!

    • GH
      July 18, 2015 at 3:20 pm

      I was initially classified as GBS. I suppose the diagnosis was changed to CIDP because the progression was too slow. GBS, by definition, reaches its maximum in six weeks or less, typically in less than four weeks. Also, I did not have respiratory impairment, which is typical of severe GBS cases.

      A month was too long to wait after deciding to switch from IvIg to PE. It was about a week for me. Better late than never, though. I wish you a good recovery.

    • July 27, 2015 at 12:54 pm

      I was just diagnosed with CIDP since my neck injury and was wanting to know if anyone else is effected by heat? I don’t feel pain nor do I get the sensation of being hot or cold but when I go out and it’s hot out I seem to get worn out and weak. My entire body has the numb tingling feeling from the shoulders down. It is a weird hopeless feeling and since I found this forum I thought I would ask.

      • July 30, 2015 at 11:30 pm

        twince1, I have a variant of CIDP and receive regular infusions of Ivig, yes, I am greatly troubled by heat. Here in Switzerland, we have just experienced the hottest June & July on record. The heat makes me feel extra weak, tired and I ache all over, including numb, tingling sensations and pain in all four limbs. It feels like a regression in my condition, but on the one or two cool days we have had I am better, so yes, in some people I do think heat plays a big part in aggravating symptoms. Good luck, and try to stay cool, I find plenty of iced water and cool showers are helpful.

    • GH
      July 27, 2015 at 2:28 pm

      twince1, you should start a new thread in the CIDP forum for this. But certainly feeling “worn out and weak” is characteristic of CIDP. As for heat, I think everyone feels some exhaustion in hot weather, so I suppose that’s especially true of someone with CIDP.

    • September 1, 2015 at 3:28 pm

      Hi, I got diagnosed with CIDP last year and started IVIG in August. Frequency now every 3 weeks. I get some brain swelling at high altitude with CIDP, and take Diamox for that. I also have RA. Right foot is more nimb lately and is spreading up to mod leg area. Last physical exam one month ago showed worsening bilateral leg weakness. I have trouble getting out of a recliner. Started PT yesterday. Getting anxious as I don’t know the worst case scenario. Does this cound like chronic progressive CIDP? I can’t have autologous stem cell transplant until I get stronger, and rven then, how does the house cleaning get done to ensure a clean environment? I sense I am worse, and I called the doctor to ask for a new EMG/NCS.