Mark? You hit a nerve or three about it all…
TO ME! Thank you for not being SHY about bringing up these issues.
1]- Why isn’t fatigue considered a symptom? – Hummm. NO definitions… Well, DUH! No defintions are standardized for our PAIN levels [or any other pain issues] prior to and during diagnosis! It all seems to be to be extraordinarily subjective and wholley connected to where the diagnosing doctor was trained and his/her subsequent experiences. They vary very widely to be understated.
However if you extend your search of fatigue to other autoimmune issues from thyroid to MS and beyond, you will WILL find common threads of how the immune system’s assaults to our bodies does cost us in this quarter.
2]- Volunteers for clinical trials? – I for one have tried…twice! But prior conditions I’d had/have excluded me. I guess I’m not pristeen enough for a trial? Other issues relate to if your docs would participate in trials [I know my own do, but not for my condition] or the geographic location of some trials. I check on the ‘trials NIH’ site regularly to see if somethings’ perking? The other aspect is that as one already on IVIG, going into a trial? Might mean that I’d be getting a placebo! Somehow then the status quo seems much more comfy….
I think the effort among Breast Cancer survivors and families to create a history and/or donor pool is a cool idea….Honestly, having both? I at times do think they mite be connected? As good a reason as any?
3]- Hashi’s and CIDP? Well, maybe, maybe not….both are immune issues and I’d had hypo-Thyroid for ages before the CIDP ‘evolved’. About 6 months after my onset tho, my thyroid went whacko and no further testing was done at that time other than changing thyroid meds….. 3 years later diagnosis of Hashi’s was confirmed, but no treatments really changed for that… There mite be some connections, but not one doc really tested for that aspect at all! Frustrating? Yes. This is life? YES!
A really comprehensive survey of such detailed info might be very hard to get from some folks…. Privacy and other issues do intrude. Unless you can cull stuff from insurance actuarials [sp?] These are usually secondary plus issues not primarily related to death [know someone who’s working on this stuffs-scary stuff it is!] How one accesses these folks is beyond me for sure! Likely more interesting? Would be a ‘partner’ survey of CIDP’ers and their Docs to see how each perceives the same questions/answers. That would likely be different in terms per perceptions big time.
I wish I could have gone? But like some critters, I really do NOT travel well these days!
Keep asking questions, please! I for one am grateful that you asked them.