neuromuscular

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progres disease

How do you cope with living with a progressive disease? I hate how I’m losing strength every year. #neuromuscular #Anxiety

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Something worked for me, please read on

I had BMS for a good 20+ years. I questioned my general dentist, periodontist, oral surgeon, pcp,
endocrinologist, and anyone else who I could ask if they knew anything about it.

I my case, it only affected the left sideof my mouth, lips, tongue and upper palate. Right to the midline. Odd.

I was told by different medical professionals that it was psychological, it was due to a combination of the medications that I was on, it was food intolerances and more. I tried " miracle mouthwash" and .05 mg clonazepam 3 x day. No change.

I eliminated different foods and food groups for weeks at a time. Nothing.

Sometimes wearing my bite guard during the day would lessen it, but only a bit.

As I was in the process of getting diagnosed for a genetic disease, I had reason to see Neuromuscular Speciaist/Neurologist/Psychiatrist (all one physician) at Mass General in Boston. Along with being diagnosed with Mitochondrial disease (muscle biopsy then Genetic testing) I was also diagnosed with small fiber neuropathy (skin biopsy) and autonomic dysfunction (lots of tests).

I figured that this is the person who can help me with BMS! He discusses things with colleagues at Mass General and other Boston hospitals. He trialed me on Gabapentin and Lyrica but they really affect my mood. Trialed some Parkinsons drugs (off label, I don't have Parkinsons). Finally landed on a drug called Pramipexole (another Parkinsons drug). My pain went from a 10 to a 1 with some time and dosage adjustment, if I have any at all.

Your mileage may vary. Be well!
My Neurologist- Dr. Michael Bowley
Mass General Hospital

#BMS #SmallFiberNeuropathy #neuromuscular #mouthpain

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