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Sensory Ganglionopathy help!!

Neuropathy | Last Active: Aug 15 5:06pm | Replies (24)
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@langloism

I’ve recently been diagnosed with sensory ganglionopathy I have horrible burning/numbness in and on my mouth, right foot and entire leg. I’m on 1600 mg of Gabapentin starting IVIG infusions hoping for some relief. I’ve had theses symptoms for 3 years and finally found out what it is. I’m 64 yrs old female and I just hate it

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Replies to "I’ve recently been diagnosed with sensory ganglionopathy I have horrible burning/numbness in and on my mouth,..."
ratmum | @ratmum | Mar 13 12:03pm

Hi Langloism,

Just diagnosed with sensory ganglionopathy. Please see my response to Leslie for details.

That’s a lot of gabapentin you’re on. I was on 300mg a day and cut down to 200mg because it spaced me out. I may just be hypersensitive.

Not sure if you updated the forum re: IVIG. I hope it worked for you. Do you know what’s causing the SG? Autoimmune disease?

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leslie04 | @leslie04 | Mar 13 9:01pm

Hi ganglionopathy sister. We have a rare condition I tried Gabapentin but had to many side effects. I am hoping you the best of luck with IVIG infusions. I would like in the future to know if they benefited you.

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