I agree with you Mark, about the doctor’s definition of the feeling of success. The Mayo was satisfied to send me home after 4 months there in a power chair & no use of my hands. They had done every test imaginable on me (my hospital bill was over $200,000,) saying that after the IVIG, the PE & solumedrol, they had done all that they could do for me. They never thought “outside of the box.” I was told by a team of 6 neurologists, right before they released me, that I was refractory to all “standard” treatments & was essentially like a person who had ALS, & would die when the nerve destruction eventually reached my lungs & diaphragm.

My husband wouldn’t give up; he eventually got me in to see Dr. Gareth Parry at the U of MN, a specialist in GBS & CIDP who literally writes the books on these two illnesses. I told him I couldn’t live in a power chair with no use of my hands, he told me that there was one thing left to try, but it was very experimenta: high-dose cytoxan infusions for one year. I said yes…

I would find out later on that the Mayo had used this protocol on 3-4 other patiens with some success, yet they never offered it to me. It saved my life, & also gave me back the ability to walk & most of the use of my hands. That is why I prefer teaching hospitals & doctors not afraid to take risks, after all, what did I have to lose? Too many doctors ignore the quality of life factor, keep them alive at all costs. Just like my mother-in-law, who has had severe dementia since 2003, in a nursing home, yet they insisted on replacing her pace-maker a few months ago. When my husband tried to question why even do the procedure, he was treated like some kind of murderer. He has Power of Attorney (an only child,) & a signed Medical Directive, but in the end, the doctors make the choices, not us. I could go on & on…

I find this very interesting and would like to bring it up to the top.

I have gone gluten free for 2 weeks now and noticed alot less pain, better foot rotation, strength, stamina, heartburn disappeared, flatulence is gone and less sinus issues(facial pressure and painful eye movement), more energy and best of all no more napping. I Was getting 9hrs sleep at night with a 2 hr afternoon nappy. Now 6 hrs and I’m good.

Tried Gluten free last February and swore it changed gears for my CIDP but after being tested for Celiac and anti gliadin being negative I went back to eating way too much bread.
Such a condition called NCGS-is when you test negative for celiac and its intestinal antibodies, but problems manifest themselves in different ways.

Recently my pain was increasing over the last 4 months, like the IVIG wasn’t working anymore. more burning, pain and sensory loss. I by accident went probably 18 hrs without eating anything much and noticed my pains were diminishing and I didn’t really need a pain pill. Blood sugar after eating was fine. so, Then figured I’d try gluten free again. Every day I felt better and better and better. So I am 100% convinced that gluten and my body do not get along. The PCP feels I may have made a positive discovery for my well being. For my body, this is one of probably multiple triggers.

This doesn’at change the fact that I Still have CIDP, nothing has changed there. but less inflammation throughout my body without bread and wheat gluten. We’ll see now over the months how this bodes for me and pain.Thought I’d share this. It may help someone painwise anyway.–Tim–

I’m a longtime forum member, but I have not posted in a while, but I found this topic interesting and wished to share my view as it has now evolved. I’m a 47 year-old male and was once quite athletic and strong. I was dx’d with multifocal CIDP (Lewis Sumner Variant) in 2004, by which time I was already no longer able to run. Years later, there is absolutely no doubt to anyone that there is something wrong with me from a physical standpoint, as I have a pretty aggressive case, and it has been somewhat refractory to treatment.

But, over the years I have evolved my viewpoint to think of myself as a healthy person who has a disability, I don’t see myself as a “sick person” regardless of how CIDP might be “abusing” me at any certain point. People may think I had a stroke, have MS, had polio, got in an accident, whatever – it really makes no difference to me – they just see that I’m physically more challenged, and that’s cool with me. On rare occasion, someone will show interest in exactly what issue is causing my disability, and I will happily discuss. But, at the core of the issue, I choose to picture myself as a very healthy, robust individual who just happens to have a physical disability. I enjoy looking healthy, tan, trim, etc. and thinking I’m keeping everyone fooled! It’s nice when people say to me “you look great” even when I may not feel so great. I think the Stages of Grief apply to the mental process of dealing with a disabling condition, wherin you eventually reach a point of peace – not that I’m complacent and won’t try any cutting-edge medical treatment that my doctors recommend, but I don’t really grieve over physical losses much anymore.

Please know that I’m not judging, or “talking down” to any other people’s situation and how they are mentally dealing with CIDP or chronic illness, because I’ve been where you are, and I understand and have great empathy. I’m merely offering how the viewpoint of one CIDP “old-timer” has evolved in the spirit of offering up hope, regardless of where this stinking disease takes you in the future.

Best regards to all,

Bill

I just went to the Dr’s office with my daughter, and she had a chickenpox vaccination.. I acked the Pediatrician regarding this, but she never mentioned any possible problems.. I guess A person has to be careful. I’ve kinda taken too much for granted perhaps.. You would think the neuro’s would inform us if there were serious risks on this.. Deanop

If I want to be totally honest, when I was at my worst for the first 3 months of getting CIDP, I think my husband & I were both praying that God would just take me. Although never ventilated or totally paralyzed, I was unable to sit up, lift my arms or legs, or have any use of my hands. Having always been very athletic & very much in shape all of my life, we both knew I could not live that way. In the subsequent 2 1/2 years, as I showed very little improvement, I know that when the pain was unbearable, I know I did again pray to die. But I also knew deep down that it was the pain talking, not me.

Suicide would never be an option for me, simply because I could not & would not do that to my family. The closest I came to even thinking about it was after my snowmobile accident in March of 2003. The doctors were treating me for a broken collarbone, but I was suffering almost a constant pain level of about 10 for nearly 9 weeks in my shoulder & upper back. I remember getting very depressed at that time, wishing I could just get out of this body. Do I enjoy waking up in this damaged body every morning? Of course not, but I guess I have learned to adapt after over 4 years. But I know I am a very strong person with a strong will to live. Besides, I just found out I will be a grandmother for the first time! Maybe there is a reason I am still here…
Pam