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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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@change25

After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just going to check with his colleagues first before sending for an MRI scan. Not sure it's the news I wanted, but at least it is something.

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Replies to "After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just..."
John, Volunteer Mentor | @johnbishop | May 8, 2021

@change25 - I'm hoping you can let us know what you find out after your doctor and his colleagues meet. If you are looking for more information on the Parry-Romberg Syndrome here are a few links.

Parry-Romberg Syndrome Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Parry-Romberg-Information-Page
Parry Romberg Syndrome - NORD: https://rarediseases.org/rare-diseases/parry-romberg-syndrome/

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Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2021

Hello @change25,

I hope that your doctor does find a diagnostic label to put on all of the symptoms you have experienced. It is difficult to cope with all of these problems and yet not know the disorder.

Will you post again when you have some more information?

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