First of all, appologies if this seems like a rant. I was diagnosed with CIDP about three years ago now, although I had the symptoms for far longer. I've just returned from a visit to my GP (I'm in the UK). I was experiencing some bowel sysmptoms - bloating, stomach ache, etc., and pain in my groin (sorry!), which radiated up the left side of my body up my neck and into my head. I usually put these things down to a strange manifestation of CIDP symptoms. This time, though, I thought I'd get them checked out, just in case it was something other than CIDP causing it. The danger is, I think, that you can put everything down to CIDP and maybe risk missing an unrelated illness.
Anyway my GP said the symptoms made no sense. Despie my having seen him before and speaking about my CIDP to him, he basically dismissed CIDP as a non-serious illness, using the words "people with serious chronic illnesses..." and implying that it was all in my head. I'm actually quite despondent and upset about this. I went to my GP becuause I wanted to make sure my symptoms were nothing to worry about (if you see what I mean!) and becuase I assumned my GP looked after the whole person (again, if you see what I mean!).
Nothing anybody can do about this, I know, but I just wanted to let off steam!
The symptoms you are having can be from your CIDP. I have the bowel problems and had to have a colonoscopy done to verytify nothing else was wrong. I take Omeprazole to reduce acid and the pain. I also hae had to take fiber caps and Acidophilus to help regulate my bowels. This does help but does not sole the problem. I still need to take an ocational laxative.
As far as the groin, I am greatly reduced in sensation from the waiste down now. However about two years before I was diagnosed, I did get a loy of groin pain. It mostly would happen when i used my legs to pull (I thought at the time it was just a strain).
In regards to your GP, What you need to do is demand to get referals. Many Nero's are not know about CIDP and even fewer GP's. If your GP knows about CIDP and does not want to do any research on it, well then you need to find one who cares and will learn about your condition. Good luck!
only way i got anything done was by seeing a different GP (also in UK) had been going for years with same symptoms and it wasnt until my GP was off and i had to see another that he just said this isn't right and referred me to specialists ,first year granted in totally wrong direction but eventually seem to be leading in right direction.
After i had a diagnosis i saw my own GP again and he was very honest and said " i could tell you exactly what each word of the condition means but as a whole i know nothing about it but if you have any questions i will try my upmost to get you the answer"
Just like you do not blame old age for a new "old age" problem until you are certain you should not blame CIDP until you are certain and your GP should listen and evaluate on the clinical evidence.
There is a lot of good medical literature about CIDP to which a competent GP has access. My GP has gone to the trouble and can explain in technical detail just what is going on and how the treatment I am on should be doing its job. For mine - that is a GREAT GP - find one like that if you can.
I've spent the better part of 30 years finding a doctor that did not tell me "it was in my head" or because they cannot find it, there is nothing wrong. Even though my blood tests came back normal my EMG was not good. My neurologist said to me “this is not in your head”. It meant everything to me. She still thinks it could be chronic Lyme or some other infection. We have stopped trying to figure out where it came from and treat the symptoms. You need to be your own advocate. Just because it’s may be part of CIDP should not mean that it does not need to be treated. Find yourself a doctor that “gets it”.