New member with question about cause

    • Anonymous
      June 26, 2008 at 2:28 am

      I lived in a fema camper for almost 2 years after “Katrina” with very high level of formaldehyde in it. Could this be the cause of my CIDP. It took 6 months for diagnosis and 4 different doctors.
      i have had the IVG treatment but no changes yet.

    • Anonymous
      June 26, 2008 at 7:46 am

      Hi samfox1, Welcome to The Family. That environment can’t be ruled out by any means. Its a chemical and it can alter the response of cells in the body. Sorry you are going through this stuff on top of All You have already been through. Take Care.

    • Anonymous
      June 26, 2008 at 10:50 am

      There are no known causes for out afflictions – as for no changes yet, how many treatments have you had?
      I was diagnosed last Sept and had 4 months of IVIG and didn’t have any results either. We then tried Prednisone for 3 months with no results. Next came Plasma Pheresis and no results from that either – I’ve been getting progressively worse. I have a visit scheduled for a new specialist at the Hershey Medical Center here in Pa on July 17th. We’ll see what he comes up with.

      Good luck…..

    • Anonymous
      June 26, 2008 at 12:35 pm

      Certainly your living conditions could have caused your immune system to go haywire. However it’ll be REALLY hard to prove to anyone. My daughter has CIDP from living in an apartment with mold. We’ve spoken with many lawyers & it’s pretty much impossible to prove.

      Good luck,

    • Anonymous
      June 26, 2008 at 1:10 pm

      I guess no one really knows for sure what caused our CIDP. In the beginning, when I was first dx with GBS, I was told that it was from a cold/viral infection I had battled all of that winter. But when I saw my dermatologist last summer, he said he was not surprised that I have CIDP as I had battled terrible allergies & ecsema from birth until I was 21. Both are autoimmune, so he said I was probably predisposed to another autoimmune illness such as CIDP. Also said he had 5 other patients with CIDP, but could not give out any names. I came down with CIDP at age 48, long after my childhood issues had been resolved. But I would feel better if I knew it was something already in my system that caused all of this…

    • June 26, 2008 at 1:32 pm

      So sorry about the fema trailors. I saw a show on the conditions of the trailors and the small spaces you are expected to sleep in. It angers me that so much money is being used to rebuild other countries while our own exist in these conditions. I don’t know what a better solution would be, but I know there has to be something better.
      Regarding the formaldahyde, my son who is 11 and has cidp, has an issue with formaldahyde as well. We purchased a sweatshirt (post cidp) and the smell from the color transfers was making him sick, headaches, nauses etc. Apparently the manufact. use formald. to set the transfers. As soon as we got rid of the shirt he was better. Could the chemical have caused your cidp? Who knows, I have given up wondering how or why, I just focus on getting it under control. Do you have any other autoimmune issues as mentioned in the above post, allergies, eczema, anything? If you do, you already had autoimmune issues which makes you more predisposed to any other autoimmune disease. Maybe the formaldahyde triggered the cidp, but anything could have, from a vaccination, flu shot, surgery, cold, raw chicken, anyhting.
      How much ivig have you received? Are you getting anything else with it? What are your symptoms currently? Does your doc plan on continuing ivig and maybe adding solumedrol to it? Keep us posted, and don’t give up. By the way, are you still in the trailor? Perhaps if you are, the doc could write a letter to help get you out!!!
      Good luck!
      Dawn Kevies mom

    • Anonymous
      July 2, 2008 at 12:48 am

      I have read that it could be caused from mold. I have also read it can also be caused from flu shots. My husband works in a very old building that everyone says contains lots of mold. I think that may have what caused it. The doctors are saying no one knows for sure what causes it. I guess that is why they call it a syndrome. I know I do not get flu shots anymore when I read that they might be the cause of cidp.

    • Anonymous
      July 4, 2008 at 10:29 pm


      I have never found out “why” I got CIDP. At this point (20 years later), it is immaterial. I know this is a world where everybody wants to blame, and I certainly cannot rule out your premise. I would ask you to focus on your treatment and your care.

      One thng that is absolutely true is that stress is an aggravating factor in making your situation worse. Stress won’t cause CIDP, but it will keep you from healing sooner. So, let others work on the cause, you focus on your recovery.

      Take care

      Dick S

    • Anonymous
      July 9, 2008 at 2:13 pm

      Thanks for all the info. I have had only one of the IVG treatments and last visit Dr put me on Lyrica because of pain in left side . No signifcant improvment however. I do cough alot ,dont know why.
      I am out of fema trailer now,thank the LORD for that. I have a hard time adjusting to not being able to do all that I want to. I was hoping to have garden and plat flowers around new home but just cant manage to do it. I cant even clean house,had to hire someone. i still can wash dishes and cook however. Any suggestions or info woud be appreciated.

    • Anonymous
      March 16, 2010 at 11:45 pm

      Hi Everyone, thanks for inpur. I am very sorry I kept up with developments. I have been rediagnosed with CISP instead of CIDP. It is a sensory neuropathy with same problems as CIDP except I cant taste, smell or feel things like I should. I was put on Predisone 60mg for several months,because I had lost over 30lbs and the IVG didnt work, I was using a walker by then and riding around the store in one of those motercars. I gradually got better but I hated the Prednisone it makes your face look like a chipmunk. I did get better and am no on 15mg and 5mg everyother day. My doctor started me on imuron and gradually reduced the Prednisone. I still cant taste and my feet and ankles are still numb. Thanks to the Lord and a great doctor I am better. Those of you out there remember there is always hope and prayer can accomplish anything. “For in Him all things are possible.”

    • March 17, 2010 at 10:28 am

      Glad you were able to get help! I have recently come to terms with your last comment and have opened my eyes to that prospect as well. It is a calming feeling, (for me anyway) once you realize that!! Anyway, I was wondering if you ever checked if you were allergic to formaldahide and the coninual exposre triggered the cidp? Wishing and praying for your continmued progress.

    • March 17, 2010 at 8:52 pm

      So glad to hear you are getting better. I am sending prayers your way.