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Old 12-14-2018, 04:16 PM #11
Pimon Pimon is offline
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Congratulations on pregnancy. Looks like you have fairly competent care. My care was an absolute mess. I had similar symptoms as you and even had skin rashes and the gallbladder pain which ended up being referred pain. Anytime I hear something like this first thing I say is make sure it isn't early start of autoimmune encephalitis from ovarian teratoma/dermoid. Most doctors have no clue about that nightmare. Before I got deathly ill I just had annoying one sided neurological symptoms and MS and SFN was suspected too. I only got surgery by chance, and still fighting for proper treatment.

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Originally Posted by Droffi627 View Post
I'm so sorry I haven't been able to respond. The antistriational antibody led my neurologist to send me for a CT Scan of my chest to rule out a thymoma. Luckily, CT came back normal and myasthenia gravis wasn't even entertained. Before I could even finish saying I thought I had it, she told me "absolutely not." And she was right on that front. She said it could be related to something autoimmune, and I do have psoriasis.

However, here I am a few months later with the same symptoms. Still having that weird numbness that isn't really "numbness" - I can still feel my hair brush against my face or if I make direct contact with my skin with say my hands, there's no loss of sensation. It's more like a burning? It's a very weird sensation and it comes and goes mostly in my face and arm.

Ontop of this, I still have sensitivity to bright lights. Developed floaters. Still feeling light headed. Not as dizzy. I was just about to go for an MRI of my brain when I found out....

I'm pregnant! 9 weeks now. Needless to say, the MRI has been put on hold lol

But now I'm left with no answers. Again. My neurologist performed a skin biopsy on my right leg which came back with significantly low epidermal fiber density but never actually explained the results to me, just mailed them. On my thigh, it came back at a 3.1 - range is 2.0 - 3.6. My ankle came back 2.7 - range is 1.8 - 3.6. Not sure how that translates to significantly low but then again, my neurologist switched practices and never called me. Why do physician's do this????

I keep thinking I have something extreme, like MS, and I'll never know because I never went for the MRI. And I certainly don't want to be sick when my baby makes its arrival. I want to feel like my old self, before my surgery and before all these weird things started happening to me. I'm hoping it just gets better with time. I dunno what else to do.
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Old 12-14-2018, 10:06 PM #12
Droffi627 Droffi627 is offline
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Droffi627 Droffi627 is offline
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Thank you for your well wishes and reply! How was your blood work when you were diagnosed with that? Mine is relatively normal.


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Originally Posted by Pimon View Post
Congratulations on pregnancy. Looks like you have fairly competent care. My care was an absolute mess. I had similar symptoms as you and even had skin rashes and the gallbladder pain which ended up being referred pain. Anytime I hear something like this first thing I say is make sure it isn't early start of autoimmune encephalitis from ovarian teratoma/dermoid. Most doctors have no clue about that nightmare. Before I got deathly ill I just had annoying one sided neurological symptoms and MS and SFN was suspected too. I only got surgery by chance, and still fighting for proper treatment.
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Old 01-06-2020, 09:31 AM #13
Droffi627 Droffi627 is offline
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Droffi627 Droffi627 is offline
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Well.. I'm back lol and still with the same issues, and no answers.

I had my son via c section on July 6 - healthy, HUGE lol I recovered well and had my MRI done in November - MRI of the Brain w/ contrast, MRI Cervical Spine w/ contrast, MRI Angiogram of the Head - ALL CLEAN (Except compression in my C Spine).

September 2018, I had an MRCP which showed my back and spine and that was normal also, except for slight scoliosis and a bone island.

Tested for Lyme again - that's 3 times now. Negative.

B12, normal. Vit D, normal.

On paper, I am the poster child of health. Inside, I feel like I'm slowly deteriorating with no real answer as to why.

Still dizzy. Still extremely sensitive to light. Still light headed (depersonalization). Now I've developed panic attacks. Still have burning in my legs and arms. Now I've developed sporadic buzzing through my body, almost feels like bursts of electricity.

What. The hell. Is going on.
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