suzanne- just now back on and
sorry about that. thank u so much for the reply. can’t believe how much all the information/experiences of others helps.
good point that most docs never dealt w/cidp. finally finding out it’s “rare” explained why i’ve been looked at like i’m nuts when i’ve been asked (i.e., er room, etc). i did read about gbs and saw how similar. i do have articles and such. never thought of bringing anything in tho. it’s worth a shot. thank u.
yes, yes, yes, as far as speech problems, bp, body temp. more things off my “am i just crazy” list! i didn’t know this tho and i found that i have to keep checking, researching b/c the more i know, find answers for, the better.
–i’m going to assume that not being able to palpate pulse and DTR (deep tendon reflexes??) dropping part of it also. (from my last apt)
as far as being hereditary or not – if i understand u correctly (a function that’s also going-i am frustrating people and trying so hard not to, very upsetting). so the tendency can run in families -for autoimmune? – but cidp itself is not hereditary? hopefully i’m not repeating things in my original post but, i did find that the supposed gene for crohn’s and for cidp are the same. my son has crohns. i think i’m trying to find answers to help on research that they are still doing and such limited knowledge by docs/neuros so far.
as far as any speech/cognitive, etc. problems that certainly seem to be due to this as seems many people in the same boat, wouldn’t demyelination affect this. i’ve been trying to check on that also. also for some information as far as the process of or progression of demyelination. i’ve gotten different answers and even in articles. i know the myelin gets destroyed, then what. but it can repair/replace itself w/say ivig or such. if i’m making any sense here.
i thank u for the words of encouragement as well. i’ve learned more on here than anywhere as well as just knowing these other “symptoms” are part of it and i’m not nuts. dj
Sorry you are feeling bad. Maybe contact with others who understand what you are dealing with will help. I can’t answer all of your questions, but I’ll try to tell you what I do know. I’m a GBS patient, but there are lots of similarities to CIDP.
Yes, it is discouraging when the docs say they “don’t know”, but most docs have never actually treated a patient with CIDP and really don’t know much about it. I’ve found it helpful to “educate” them a bit by printing out articles (from this site and other sources) relating to my disease. Most docs don’t have (or take) time to do a lot of research on these things. Somehow, showing them an article written by a medical source will help them to understand what is going on and often spurs them to try to help.
Fatigue is really hard to deal with, especially compounded by stress. You are right to try to limit your stress, since it does make symptoms worse.
Pain is tricky. Many doctors are very reluctant to prescribe narcotics, unless they know the patient fairly well, and have tried all other avenues. I do believe you when you say that narcotics can help your pain, although most medical literature says it’s not effective for this. I find that it’s effective for me, but fortunately, I only need to take it intermittently, and my doctors have been very understanding about it.
Speech/word problems – if you mean searching for a word frequently, or hesitating when you are speaking, then yes, this is something that a lot of us
deal with. I am 3 years post GBS and still sometimes have difficulty with it.
Don’t know why, but obviously, it has to do with damage from the disease.
Fluxuating blood pressure and body temperature is also a common problem. This is caused by damage done to the autonomic nervous system. I don’t know if it will go back to normal or not. Everyone heals differently.
People with one autonomic disease are more prone to have another, and there does seem to be some genetic predispositon, although it is not hereditary.
Hope it helps to know that these things are just more of the residual problems from the disease. Some of them may go away, others not, some may improve or change. Not an answer, but the best I can do.
Keep your chin up – you are going through a difficult time now, but it won’t always be this bad. Once you get your legal problems behind you, it should help enormously.