LogFAQs > #945215799

eating4fun posted...

@YoukaiSlayer well, good to hear from you that you got a diagnosis. I worried about you when you had a bout of bad condition and didn't post for a while.

Unfortunately having a diagnosis isn't as good as it sounds here because it's almost certainly not the whole problem. I've actually got 3 diagnosis and even together they don't really explain all my symptoms. I've got MCAS (extremely rare allergy cell condition), cranial cervical instability (extremely extremely rare neck spine condition), and EPI (rare pancreatic condition). The thing is, it doesn't make sense for me to have any of those at my age and my symptoms are atypical. It's likely that I have some extremely rare (possibly unique) soft tissue problem that is causing my spinal discs to degenerate and those other strange issues. The thing is I don't have the common (relatively) tissue problem of EDS. I have no hypermobility (joints that bend further than they should) and my genetic markers don't indicate any other problem that they know of. Of course, the whole area is not well understood (because scientific research is handled in the dumbest way possible).

I really am a medical mystery which is somewhat vindicating from all the doctors that just said it was probably anxiety or something but at the same time, no one knows how to treat me. When I go to the hospital they say "I don't know what we can do for you" cause I can't tolerate any medication or IV fluids. When I go to the doctors they say "You're case is too complicated for me, I only deal with the common stuff". I have tests indicating something is wrong but no one understands what. Granted, it's not like they look very hard. I've had like 5 CT scans, all of the abdomen. Had several x-rays from doctors, all of the chest.

Like, they should just be scanning me head to toe and looking for anything unusual at this point but doctors won't do that for whatever reason and they waited too long so now weightloss has made everything significantly more dangerous. Most of the good information I do have like the spinal digital motion x-ray is something my mom found from doing a lot of research on the internet and scheduled herself. If I'd actually left it to the doctors I wouldn't have any of my diagnoses and I'd probably have starved to death by now. Like, if your condition isn't a common one, most doctors don't even try to figure it out, they just say "idk what it is, you should see someone else" but that "someone else" they refer you to is just going to say and do the exact same thing.

---

I'm ninja
(you can't see me)