Getting someone to believe me

    • Anonymous
      November 17, 2011 at 7:22 pm

      quick back story…i was diagnosed with GBS about 5 yrs ago. this was after i was completly paralyzed from my chin down. i complained about numbness in my feet for sometime pryor to going nmb from the chin down. i saw several doctors and was in out of the ERs. each time i was told it was in my head.then i was finally admitted after i was stood up and fell to the floor then they figured that there was something really wrong with me. i now have CIDP and am somewhat numb from the chin down still.(that feeling when you foot falls asleep and you try to walk on it pins and needles) Well i have been getting IVIG every week then about a month ago the doctor decidedd to see if i could go four weeks without treatment well needless to say i started back this past monday and am still trying to recover from my “vacation” I hurt from the chin down. Now i have a throbbing/sharp pain in the back of my thigh right above my knee. It is killing me. I cant get any one to take it seriously. MY mom says oh it will go away, it happens to me all the time. My neuro says to stay home and rest for a few days. Becuse of my history i am afraid to wait and see if it goes away. MY nurse talked to my neuro and they are going to get me a new therapist. Once again everyone is assuming that it is in my head. All i know is that i am in pain and i wish they would listen to me.

    • Anonymous
      November 18, 2011 at 3:40 pm


      it looks like it’s time to look for her new neurologist. After all you’ve been through you would think he would know that there is something wrong with your nerves. In the meantime hang in there and don’t give up hope.

      I know it can be frustrating when people don’t understand what’s going on. That’s just part of the gift of CIDP. It’s the gift that just keeps on giving. Personally I would’ve preferred that somebody else wound up with this gift, but that’s life.

    • Anonymous
      November 18, 2011 at 6:57 pm

      she said i needed to talk to my pcp and get a referral to a specialist. It could be something with my back. ( i have seen her in the past for similiar back issues) I will be able to do that on monday. I am taking it easy for now. Even though i dont feel better when i lay down.

    • Anonymous
      November 18, 2011 at 8:56 pm

      I think you need to get another opinion, you should not need a referral. Check with your insurance company. For your doc to just take you off IVIg for 4 weeks and you doing so bad and they won’t put you back on it. I would be livid! This is not in your head! Go for it, get a 2nd, 3rd, 4th opinion!
      Wendy 🙂

    • Anonymous
      November 18, 2011 at 9:44 pm

      Have you had any test done to confirm CIDP?

      I am not sure of the name of the test but it tests the electric impulses of your nerves. Done by neuroligist.

      What about a lumbar puncture? If it shows elevated protein it is a good indication of CIDP.

      Good luck hopefully you get some answers soon.

    • Anonymous
      November 18, 2011 at 10:32 pm

      That pain in the back of your leg, did they check it for a possible blood clot?
      Barring a worst-case scenario, it could very well be a knotted, cramped muscle that needs to be stretched out. We get these all the time with CIDP. Heat, massage, then a gentle and prolonged stretching should help, but if it’s in a hard-to-reach location, it will take longer to deal with. These are really painful, I know, but try the heat, and if you have a vibrating foot massager, that might help to break up the tension in the cramped muscle. Otherwise, try massaging with Tiger Balm, and keep trying to relieve it with long, gentle stretches. It will hurt at first, then relax at the end, and you’ll have relief from the pain.