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At a loss, multiple consultations still no answer...any idea?

Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)
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@athenalee

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!

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Replies to "So glad you’re on a good path to figuring out a solution! I’ve found that looking..."
change25 | @change25 | Jun 1, 2021

Absolutely, my gut is normally pretty accurate and when I saw PRS something clicked. There's too many coincidences, where I have at least 6/7 of the symptoms. I'm not saying for certain that it is that but I'm fairly positive it is related to it. As I say my general health has improved recently it's just my stomach and from my neck up where the problem persists. So there are some positive though the headaches have worsened. If only I could get down to mayo sooner.
Oh well - not to worry I'm on my way. Hope you are well.

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