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← Return to Sensory Ganglionopathy help!!
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Hi Leslie,
A belated response-I just joined the forum.
You are not alone. I recently received a diagnosis of sensory ganglionopathy and am struggling to deal with half-body numbness and dysesthesia (feeling of tight bands around my legs and thorax). I’m still adjusting to the altered sensations. So bizarre, I feel like I’m sitting on jello. Now I know there’s a lot of fat on this butt, but this sensation does not represent reality!
I’m a science geek who has and am still reading the scant medical literature re: our rare condition. I can share what I’ve found. I cannot diagnose, of course, nor recommend treatments. But if you need someone to commiserate with, I’m here. This is a tough diagnosis, but we’re tough women! (66 yo F)
Replies to "Hi Leslie, A belated response-I just joined the forum. You are not alone. I recently received..."
Hi Leslie hope your well
I’ve had this condition almost 3 years now , I recognise the tightness round the legs , I also have over sensitive fingers and feet but my main condition is lack of balance.
I live in England and I’ve had a few courses of infusions which have helped the tightness in my legs ( don’t know if you tried this ) but can’t have any more because of the expense on the NHS it did help a little with my balance but can’t walk unaided.
Was wondering what treatment you’ve had
Great attitude. As a physical therapist who was diagnosed with idiopathic sensory ganglionopathy 8 years ago, I find myself perhaps a medical mess but clinically fascinating! Even after 8 years, I find that I can make functional improvement. There are so many workarounds, we just have to be creative.
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Thank you so much. It’s been a hard struggle for me. I would love to read some of the research you have found. And we will now be the best of ganglionopathy friends.