Sensory Ganglionopathy help!!

Thank you for the resources. I was diagnosed five years ago. I have constant pain everywhere and lots of nerve damage. I can’t walk very far and use walker or wheelchair. Has anyone been advised to take methotrexate. I am hesitant to take it.

Hi Elaine, There are some members with different types of neuropathy who have mentioned methotrexate. Here's a link to the different comments if you want to read their experiences - https://connect.mayoclinic.org/search/.

My understanding of SG is that their are 4 possible related causes:
- Sjogren's syndrome or a few other autoimmune diseases,
- Paraeoplastic neural syndrome ( precancerous),
- Vitamin toxicity,
- Infection.
It took 3.5 months for me to get diagnosed. Again, my understanding is that some people are not diagnosed for years. In some instances, as in my case, diagnosis came from elimination of other conditions. My decline was very rapid. They tried IVIG and steroids. Because there was no improvement and the only positive test I had was related to my spinal tap, I was diagnosed with idiopathic SG. In essence, they felt it was probably immune related but could not find a direct cause. The only good news was that once the damage was done, it did not continue to progress to other systems.
Within 3 weeks of my initial symptoms, I was non-ambulatory, had very poor trunk control, was totally dependant on my husband for transfers, lost all reflexes including pupil and gag, had hypotension, rapid heart rate, dry eyes and mouth. My strength was normal but of course I lost most sensation in my arms, legs and trunk. Some in my face. Because I could not tell where I was in space, I experienced (and still do) sensory ataxia. I could not push myself in a standard wheelchair because my fingers would get caught in the wheels. I had to use a power wheelchair but that finally gave me some freedom. And then there was the pain, neuropathy and allodynia. (Horrific as you all know).
Over the first two years, I pushed for inpatient rehabilitation twice so I could get therapy 3 hours a day, 5x/wks. Then outpatient physical and occupational therapy. I also went through inpatient
vocational rehabilitation with the goal of at least working part-time in some capacity. As I was unable to type, I used a voice activated computer. I went through an adaptive driving program. Vocational rehabilitation paid for the adaptions to my car so I could drive independently. I did return to part-time work for about a year and a half as a medical biller, but then came covid. I have not worked since.
After about a year, I walked with multiple leg braces, supports and a platform walker with assistance. By 18 mos, I walked independently with a four-wheel walker. Now, I can walk throughout my house at times with no assistive device and no braces. In the community, it is with the rolling walker. It may not be pretty, but what a gift!
Living in a city, I looked for any free or low cost exercise programs that would accommodate me. I contacted a nearby physical and occupational education program and asked if their students would like to assess and treat me, because my symptoms were so different. The students loved and appreciated it. I found groups that would allow me to volunteer in some capacity, with my restrictions. Even after 8 years, I still try to go to outpatient therapy for
tweaking of my movement patterns. Moving, activity, and exercise in any capacity, even on the bad days, is critical.
Personally, my toughest hurdle was the pain and poor endurance levels. I still take large doses of gabapentin for the neuropathy, but not as much as I initially did. ( We learn to live with chronic discomfort/pain) For the allodynia, I used a technique utilized by amputees for phantom limb pain. I was amazed at how quickly (1-3 MOS) that technique helped. Now it is almost non existent.
My and my family's life is very different than before but also much the same.
My best days are when I set one goal for the day (like getting through the laundry and remembering to say good for me), and because we like to travel, plan a short trip in the near future and a longer trip in the distant future.
We all have our own story and can learn from each other. As hard as it is we have to persevere. "If we don't use it, we lose it. If it's physical, it's therapy." (Sorry to get on my PT soapbox)
Best to use all!

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Is this group still here? I have had autoimmune sensory ganglionopathy well when they diagnosed me it was probably 2 years ago but I've been it just happened quickly. It's been three and a half years since I've been normal. I just I'd like to know what people have done how they get through it how they get through the day. Having it sucks have good days bad days. I got sick recently and when I did my body kind of broke down again. My neurologist says that is normal that I cannot get as bad as I was it should never on a relapse I guess is the word. Fingers crossed but I was walking with a walker obviously but I could do a lot. However since getting sick I don't have the energy I'm tired all the time again I can't walk very far I refuse to be back in a wheelchair. I just want some insight what kind of drugs have we have you tried what works what didn't work I've been through a lot. Any help would be awesome
Thank you in advance

John, guess I'll introduce myself too. I have had slowly evolving sensory ganglionopathy going back to 2016, but didn't have a diagnosis until 2024, as symptoms became more evident. Progression has been glacial, but is now having a large impact on my quality of life. Pathogenesis is impossible to determine; I have Sjogren's but no antibodies, a "probable paraneoplastic" score of 7, but again no antibodies (cancer is an adenocarcinoma that wasn't identified until March 2025), and from 2012-2014 I had undiagnosed Lyme disease, so I've got the trifecta (oddly, I've never had COVID, but I'm not complaining :-). Neuropathic symptoms started on the tips of my fingers and toes 6-7 years ago, but now are everywhere I have skin, including face, lips, and tongue (even my front teeth feel numb). Currently on IVIg and Rituxan, but the slow progression continues. Been on mycophenolate and methotrexate without discernible effect. I think I've been through the entire pharmacopeia for the pain, but found that anything that releases dopamine seems to work best (exercise, chocolate, laughing, socialization, warm baths, etc.). Lots of related issues, including dysautonomia and exercise resistance, hypertension, etc. Not sure how to find my way around here, but will look at the link you provided above. Ron

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?