Sensory Ganglionopathy help!!

Hello @leslie04, Welcome to Connect. It is a terrible feeling of being alone with a diagnosis and no one to talk to about the diagnosis and any treatments that may provide some relief. While many of us here have a different neuropathy diagnosis, I'm sure that you are not alone in your pain and balance issues due to sensory ganglionopathy. I don't have the pain with my small fiber peripheral neuropathy but I do have the numbness and balance issues. There are other members here who do have symptoms similar to yours with a different diagnosis.

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think the best thing you can do is to learn as much as you can about your condition and any treatments or therapies that are available which may provide some relief. I think Sensory Ganglionopathy is also called Sensory Neuronopathy. Here are a couple of references to get you started while we wait for other members to respond and join your discussion.

--- Sensory Neuronopathy – Sensory Ganglionopathy:
https://www.news-medical.net/health/Sensory-Neuronopathy-Sensory-Ganglionopathy.aspx
--- Sensory Neuronopathies: https://www.semanticscholar.org/paper/Sensory-Neuronopathies-Crowell-Gwathmey/91ff951a4e663cd40f1996fd0c4d74ab4693fa17.

Have you tried using Google Scholar (https://scholar.google.com/) when you are looking for medical research?

Thank you so much John!! I was able to find more about it with the resources you provided. Thank you for sharing your journey with this.

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

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)

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?

Welcome @ratmum, I'm happy to see that you have already connected with @langloism and @leslie04. Hopefully other members with some experience with sensory ganglionopathy will join the discussion.

You mentioned that you are also a science geek who loves to research the scant medical literature on the rare condition. One of my favorite search tools for finding medical research information is Google Scholar - https://scholar.google.com/. Have you used Google Scholar before?

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.

Thanks, John—for the kind welcome and the Google Scholar link. I’ve been using PubMed for the most part—just because that’s what I’m used to. It’s always good to have more sources. So thanks again!

Hi Leslie,

Glad to share references. What questions are you asking about SG? That will help me narrow down the search. There are very few articles on many different aspects of the disorder. So, for me, I search SG and Sjogren’s Syndrome because I have an autoantibody for SjS. You may have no interest in that. Rather,you might be looking for something else like..LMK.

I hate that we share this diagnosis. A little over a month ago, I was a fully functional, working person. Now, I’m, well, disabled. But working on PT exercises to improve balance. I walk—like a farmer (wide-based gait). lol. Gotta laugh. Humor is the elixir. 😊 Do you get PT?

Okay, here’s an experience only someone with sensory loss could appreciate. Was getting my blood drawn, and the phlebotomist looked at me oddly and said, “that’s my foot.” Without feeling a thing, I had been tapping her foot with mine. She thought I was playing footsie with her. I explained about my neuropathy, and we both laughed. Crazy.

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.