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Steroid resistant Hashimoto's Enchapalopathy

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Old 02-06-2017, 11:07 AM   #1
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Default Steroid resistant Hashimoto's Enchapalopathy

I've experienced serious neurological symptoms for the past year or more and after extensive testing, including multiple MRIs (all mainly normal), several spinal taps (all abnormal for high protein) and extensive blood tests that have ruled out other conditions like neoplasms I've been told I likely have some form of Hashimoto's Encephalopathy even though I don't have the cognitive dysfunction normally associated with the condition. I also have Graves Disease, which was diagnosed several years ago. My thyroid was removed to control the symptoms. MS and ALS/PLS have been ruled out relating to my current symptoms.

I now suffer from ataxia and abnormal gait, muscle spasms, double vision, intermittent although frequent "brain fogginess" and, increasingly, headaches. Steroids, administered both as high-dose IV and later oral Prednisone, failed to resolve these symptoms and actually made them worse. I've had a two-day session of IVIG treatment, which didn't resolve the symptoms either but to some extent did seem to limit further deterioration. My neurologist is ordering more IVIG treatment, to begin in the near future, but there seem to be no magic answers to all of this. Any ideas out there?
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Old 02-07-2017, 03:57 AM   #2
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My Mood: Steroid resistant Hashimoto's Enchapalopathy

Hi lobsterfan

Welcome to NeuroTalk.

My understanding is that Hashimoto's Encephalopathy usually responds to oral steroids though the optimal dose of these is not known (it might differ between different people).

This might help you in discussing this with your neurologist Hashimoto's encephalitis | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program.

All the best.
Knowledge is power.
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abnormal, ivig, resolve, ruled, symptoms

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