new but older cidp patient
I am an infrequent visitor here so I have not read all of your previous posts. However I would like to reassure you that there is at least one other person who has investigated her medical history and symptoms to the point of obsession.
There were others too who used to post here who tried convoluted paths to get a grip on their rare disease. I remember a thread here that went on for weeks about CIDP being caused by childhood exposure to large bodies of water. Ten years ago there were also exaustive threads about the benefits of food additives and vitamins. My personal favorite conspiracy therory is that CIDP was caused by Chinese germ warfare.
I think you should ask your phsyician to tell you why you do NOT have porphyria. Or leaky gut syndrome. Or a yeast infection. Or the ever sneaky low B12 damage. These are all culprits I investigated in the last 10 years.
It took literally years for me to accept that CIDP is just plain bad luck – like being run over by a bus. I was helped by a few visits with a mental health clinic and long term low dosage antidepressants (nortriptalin). I started a new hobby – quilting – and now spend most of my waking time obsessively reasearching patterns and fabrics. Lots more fun than medical sites.
You know your own body best and deserve answers to your questions and fears. However once your doctor has given you a thoughtful, respectful and complete response you need to accept his medical knowledge. Of course if you don’t trust your doctor I think you should find another medical team.
I hope you can find some mental rest. I am an advocate of getting guidance from a mental health professional and using appropriate mood leveling drugs. You have a rare disease with no known cause or cure. That’s not an easy thing and that’s why it’s helpful and important to get emotional support from the forum.
dear flossie, i agree and disagree w/you. think its important to research what is happening to your body, but also, have to have balance. i never have had total trust in any of my doctors, have gone back to the books, etc. after each appointment, and between what i find out and his knowledge, hope i’m getting the best care i can. my neuro wants me to have ivig infusions, take prednisone, and take imuran…too much for me. if i did as he said, the side effects from the above could very well be worse than the illness. i think any autoimmune disease has many causes; our bodies contain the history of our entire lives, so its pretty impossible to pick out a trigger; instead i think its an accumluation of events and a genetic predisposition. i tried quilting about 20 yrs ago and wasn’t that good at it, thank god i love to read and have pets that keep me busy:p