jUST had to say there is always hope.My wife and i had talked of things and we had all paper work the way we wanted.When i came down with GBS in November 2007 she never gave up hope.Sometimes she questioned herself while i was on a vent for 7 months.10 months in 5 hospitals and rehab and always hope everyone has an advocate.We make the days count.Many blessings and hope and prayer.
Rocky gave you some wonderful advice. A spinal tap is really needed for diagnosis. A well trained person will do it I am sure. I would stay away from a muscle biopsy as there are complications. Please stay on this site and read, read, read. I have a 4 year old little girl that has cidp since she was 2. You can do this. Who is to say that you cannot have another baby? Keep us posted. Pamela
I think I can add to this. I have been off “ALL” (that’s right, “ALL”) medication for CIDP for almost five years now. I show no signs of relapses or the return of progression and believe me, I have been tested by emotional situations and lots of stress.
I benefit from a “jump start” of physical therapy once a year.
The downside is that I was extremely damaged by CIDP and indications are that I will not heal from that much damage.
The upside is, that as the years go by and I show no signs of the return of progression, I may be CURED, I may no longer have CIDP.
YES, we do have HOPE, so NEVER NEVER NEVER give up.
I just want to echo what Shannon said. I was in a coma and on a vent within 48 hours of my first symptoms. They told my family they didnt know if i would make it or if i would have brain damage when i came out of the coma (not sure why they thought that as it isnt normally a side effect of GBS) I was totally paralysed including being unable to open my eyes. My family were told recovery could take anywhere from 3-24 months. I spent 4 weeks IN ICU. I went from being able to do nothing at all for myself to walking out of hospital unaided after 7 weeks. I am sorry your husband is having a much slower recovery, i just wanted to let you know that even though my family thought, at one stage, there was little hope I have gone on to make an almost complete recovery.
We have 3 small children so my partner had to stop work to look after the kids (with the help of my parents who live 2 hrs away and his mum who lives 5 hours by plane!) He was facing the possibility of me being in hospital for anything up to several years and not knowing what state i would be in if and when i came home. So I can relate to what you are thinking and feeling. But yes there is a very good chance things will get better. I can hardly believe what we went through even though it was only 5 months ago. I am returnign to work on the 9th of January so hopefully things will be back to normal finally. Just take things as they come and believe that things will get better, it just may take time.
My name is Julie. I’ve been dignosed with CIDP for five years. My 10 year old daughter displays many symptoms of CIDP, but we have not taken her in to be dignosed yet. We make sure she gets tons of rest etc.
My mother and grandmother seemed to display many of the symtpoms as well. Not to mention my great grandmother was in a wheel chair, but the doctors at that time could not figure out what was wrong. Needless to say, I belive there is a genetic link in the female members of our family.
My daughter cries and says it feels as though Satan himself is pushing pins in her spine. It kills us…then the next day she is back to normal. We’re probably experiencing some deniel.LIfe is so hard. I completley understand your broken heart and desire to bless your son.
Let me address your question about headaches. Migraines seem to be very typical for someone with this disease. I never experienced them prior to CIDP. Now, I must fight them constantly. I am sensitive to light, noise, movement and feel nauseua quite often.
The good news is there are preventative mediations a person can take that truly make a BIG difference. I’ve taken a lot of medications, but I find Nortriptyline the best overall. I take 40 to 50 mgs at bedtime. When I cut down even a little, I experience a migraine the next day. For sudden attacks, I find Imitrex works the best (especially for the nauseau).
Also, I tried I.V.I.G. several times, but it didn’t work for me. It made my liver enzymes sky rocket. Plasma pheresis was the important key for me. I”ve had 106 of them. I’m doing better now. I’m not receiving PE any longer, just taking Cellcept (auto immune suppressant) and resting constantly (it gets very borring).
You sound like a wonderful mother. I belive your son will get better, stronger, everyday. If you ever need another mom to talk with who truly understands, please email or call me at (916) 988-1110. We’re in California, so we’re three hours behind everyone else in the country. Call anytime.
God Bless You,