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At a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
No worries. I'll look into it, cheers. That seems to be the issue. As most research and funding will of course go to illnesses with greater incidences. So when dealing with rare diseases few facilities have the means of diagnosing and treating your condition. With that said there's always hope, you're on your way so all the best and I'm sure you'll have what you need in no time.
Replies to "No worries. I'll look into it, cheers. That seems to be the issue. As most research..."
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So glad you’re on a good path to figuring out a solution! I’ve found that looking at one potential diagnosis often leads to others, and of course loads of questions to ask your providers. I’m sure you’ve visited NORD - https://rarediseases.org/rare-diseases/parry-romberg-syndrome/. I’ve found it helpful. Another is Uptodate.com, it requires a subscription, but does have a lot of free info and references. At least seeing specialists leads to more labs and hopefully a diagnosis!