Sensory Ganglionopathy help!!

The ganglionopathy gang! That’s who we are. Hey sis. I’ve just decided I HATE gabapentin. It makes me dizzy, spacey, irritable and nervous as hell. Do either of my sisters think it helps the sensory issues in any way?

Hello @ratmum, @leslie04, @langloism and any other members joining the ganglionopathy gang. I thought someone mentioned balance issues earlier in the discussion so I wanted to share an upcoming webinar Wednesday, March 20th that you may find helpful - FPN Webinar: Alternative therapies that enhance balance.

More details and a link to register for the webinar are in the above post - here's the link to the post - https://connect.mayoclinic.org/comment/1032303/

Thank you John!!! I am signed up.😀

Me too!

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

Hi, I am now 8 years out from my acute onset. It has taken much time, a lot of effort, and support to maximize my function. Scary and challenging but ultimately worth the effort every day. You are Not alone.

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.

I haven't had any treatments. I am now off of gabapentin and only on savella. I wish there were other treatments that they could do here in the states. I've had physical therapy to help with balance. I am interested to know as far as publication what they have over by you. All I've been told is I have it. There's not a lot of information about it. And there is no testing or like a clinical trial. So I know with my balance situation I'll always have to use a Walker. I am now going on 2 years with us. I hope they're finding answers for you. Welcome to the ganglionopathy club. There are a couple of people within this thread. They have it just like us. Thank you for the response.

You've had it for 8 years. Wow. Being a physical therapist, do you have any do's or don'ts as far as it comes to exercises? I would like to pick your brain metaphorically of course. I have now had this for 2 years and all I've been told it's a condition that will never go away. That the nerves can never be rejuvenated. I was on gabapentin but got taken off and that helped a lot with the equilibrium issues I have. But the balance being off will put me in a walker the rest of my life. They now have me on savella and it helps take away the pain. Just a little bit. Welcome to the ganglionopathy club. There are other people in this thread. They have it just like us. In the future I want to start a Facebook page to help others.

Hello to my sensory ganglionopathy pals. I want to thank all the people in the group that responded to my last post last year. Just to give you an update. I am no longer on gabapentin. Which I found out after teetering down most the side effects were what I had going on. I am now on savella and it helps just a little bit. I'm also using a compound cream that my neurologist prescribed. Once the cream is on. It's relief for 10 minutes. My balance issues are still there and using a walker permanently. Also still using the wheelchair for long distances. Thank you all for giving me some hope. Knowing that I'm not alone with this disease. I am going to have more faith in my abilities to be able to handle this disease. Thank you all again.