Concerns for husband

    • Anonymous
      October 5, 2007 at 5:41 am

      Hello everyone, I am new to this forum and I have some concerns about my DH. He was diagnosed with CIDP a couple months ago and I have seen him go down hill pretty fast. He stays sooo tired all the time, he has terrible headaches(he says just sinus but it is more thansinus) EVERYDAY. He can’t sleep for leg pain ad now he is having heartburn so bad that he don’t want to eat. Does this go along with CIDP? Does he need to be checked out, I am concerned with the severity of headaches and heartburn.
      Another question, does any of ya recieve SS disability? we have applied, the dr. put dh as permantly disable.

      Thank you

    • Anonymous
      October 5, 2007 at 7:42 am

      I get headaches, sometimes they feel like sinus pain, sometimes eye pain. I also get heartburn and don’t digest things very well. If these are new symptoms then I think he should check in with the neurologist. Is he getting IVIg regularly?

      I have applied for SS disability – still pending medical review. 🙂

    • Anonymous
      October 5, 2007 at 9:59 am

      I have a couple of posts about gluten free diets and CIDP. It’s a tough diet but the digestion probs and the headaches may go away if the diet is changed. I’ve been dealing with unanswered questions for 13 years and it gets frustrating. I too have applied for SSDI but still waiting for the determination. If you want more info on the supplements that I take pm me. or email [email][/email] I also wear braces for drop foot on both legs and have trouble with my left hand. I battle depression and guilt for the chance that I’ll be a burden. The emotional end of this disease is a huge part for me to tackle but thats why I come here. If you wish to contact me you can also call if you want my cell number.

      Greensboro NC

    • Anonymous
      October 5, 2007 at 2:09 pm

      Hello Chelle,
      Welcome to your new family where we feel what you feel. I am in my nineth year of CIDP. The fatigue will probably get better. During the first year of CIDP I needed to take naps during the day and I am not a nap person at all. Although I still get fatigue, it’s no longer at the nap stage. Is you husband taking steriods? Steriods can cause severe heartburn. I suffered with heartburn for quite a few years and it was a misery to live with. I’d be very careful with anti-acids because you can really start downing them to keep up with the heartburn, better to see what your neurologist and your family doctor can recommend. I ended up with bleeding ulcers, but my stress level also had alot to do with that. My heartburn ended when I came off the steriods (prednisone).

      Is your husband on IVIG’s (infusions)? This is the recommended treatment. And if he has pain, talk to his neurologist about neurontin.

    • Anonymous
      October 5, 2007 at 9:44 pm

      Thanks for the replys. My Dh took IVIG for 3 days but had to stop bc of a severe reaction to it. So no more IVIG for him. He will begin steriods this Dec., his neo.dr. is moving her practice and will be closed for a couple of months. I know some of his headaches and heartburn is stress. I’ll keep ya posted on things.