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I'm a human puzzle looking for answers
Autoimmune Diseases | Last Active: Jul 28 5:09pm | Replies (35)Comment receiving replies
@pm56 thank you! Wow, I'm sorry for all your going thru as well. I can relate so much! All these new neurological episodes appear like on 2 separate occasions about 6 mths apart I experienced excruciating burning, shock like sensations only on my right side of face, jaw, throat for over 4 hrs each time! It was absolutely horrible. From my research that is a very vital piece of info I need to share with neuro. Glad you found a good doc. I'll update ya when I find my fit! I know it's coming. I won't stop til I do. Thank you again!
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@fedupintexas me too - i had two episodes of burning stabbing pain on one side of my face. it turned out to be ideopathic trigeminal neuralgia. It’s usually connected to elderly people or those with MS. I was in my early thirties when it happened and I didn’t have MS.
I’m now dealing with one eye on the same side that repeatedly closes itself and the eyebrow is persistently raised - I look like I got my eyebrows done on skid row lol. The neurologist believed it was a hemifacial spasm - again often connected to those with MS, which apparently I still don’t have almost 30 years later - but the MRI caught a clot in the brain after my first round of IVIG so we can’t be sure if its just a random neurological thing or if it’s because of the clot.
Like you, I’m a puzzle of seemingly unconnected dots that no one can really make sense of. But look into Trigeminal Neuralgia and see if that sounds familiar. Keep us posted!