New member with question about cause

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.

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…..

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,
Kelly

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…

Hi,
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

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.

samfox1

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

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.

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