Sensory Ganglionopathy help!!

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!

-

What you say is true. There is not a lot of literature out especially as it relates to long-term treatment. There is nothing that I have found to reverse the neuropathy. Functional progression is more related to learning how to do things differently. Being a PT, I have been very interested in different ways to learn to accommodate. Over the years I have contacted multiple companies that were working with electrical stimulation. But, these companies have primarily focused on treatment of motor deficits in spinal cord injuries. I am in the process of speaking with a group of neuro based therapists looking at neuro modulation treatment for those with sensory deficits.
I've just made contact this week and hope to speak with a primary researcher sometime this month. Once I find out what direction this may take, I will be happy to share. I will also try to share any credible publications/research involved with this group.
Hopefully, more to come.

Hi @leslie04, I combined your new post with your Sensory Ganglionopathy update to your previous discussion "Sensory Ganglionopathy help!!" - https://connect.mayoclinic.org/discussion/sensory-ganglionopathy-help/ so the members you met could see your update.

@langloism, @ratmum, and @sjt were all sharing their experiences on the condition and can now see your newest update.

Hi, I really like your Facebook idea!
As far as exercise, in my situation, foremost I have to practice joint protection. Because I have such poor proprioception (like telling if my foot is up or down, if my knee is bent or straight, etc) I am at risk for injury. I could roll my ankle, hyperextend my knee, hyper rotate my spine. I use a mirror ALOT.
I also know that walking and standing are good for my bone health. (Especially for anyone using steroids and us postmenopausal girls who are at risk for osteoporosis).
This is just me.
Keep on truckin' all!