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Spasms with MG - Maxed out on Baclofen

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Old 08-01-2019, 10:27 PM   #1
susan_mela
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Join Date: Feb 2019
Location: Alexandria, VA / Thomas, WV
Posts: 18
Default Spasms with MG - Maxed out on Baclofen

I've been having excruciating spasms (erratically all over body, but worst in pelvic floor, hips, rear and upper legs) for well over a year now as an MG patient. Neurologist doesn't suspect Mestinon is the problem and even referred me to the Stiff Person Clinic at Hopkins, because I tested positive for the GAD antibody (albeit a much lower number than typical SPS patients have). SPS clinic has sent me back to MG neurology. I have now maxed out Baclofen, but am still miserable. I am already on IVIG every 3 weeks, and the spasms do get worse as I get to the end of that period. My spinal fluid is thankfully fine other than showing a high IGG ratio and amount (likely due to MG and IVIG). Brian and spine MRIs were not showing anything suspicious in the direction spasms. Electorlytes are fine.

Has anybody had a similar experience? I'm in between doctors and have an introductory appointment a few weeks away.
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