Stiff Person Syndrome: Want to connect with others

Hello @ingritamoreno, like @becsbuddy mentioned, I moved your discussion and combined it with the following discussion:

- Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome
Here, you can learn about other members' journeys with Stiff Person Syndrome and meet members like @upartist, @speechless623 @maliakajeme @estelatorres and @pattygail,

@ingritamoreno, how are you doing with your diagnosis of stiff person syndrome?

Celine Dion - may be of interest.

Thank you!

@ingritamoreno Welcome to Mayo Clinic Connect. You have found the right place and I’m sure we can help with the answers. I’m going to ask our moderator to move your discussion to the following discussion on Stiff Person Syndrome where you will be able to meet other like members.
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/
How did you find Connect?

Is there any one here with Stiff Person Syndrome?

HNPP - I have HNPP as well. I'm 64 and it first started with numbness at 17 then major numbness at 21. EMG and NCS showed sensory abnormalities, but they were baffled regarding the cause and they just labeled it peripheral neuropathy. They wanted to do a nerve biopsy and my mother said no. It wasn't until my own son had so many neuro issues and they thought he had CMT, but genetic testing revealed it was HNPP. He had nerve transposition surgeries in both arms due to chronic pain and loss of use of fingers 4 & 5 on both hands. Surgery was successful, but has has many issues with HNPP today. My HNPP progressed over the years. I have shooting/stabbing pains, pain with touch in some areas, electric shocks, numbness (makes for loss of fine motor skills), fasciculations, RLS, dizziness, muscle fatigue in arms, legs, eyes. For decades, I've had to rest my phone or book on a pillow to use. Hard to get up from the ground. Legs stop working after a couple flights of stairs. Vision goes blurry easily with eye strain. The real shocker came in 2015 when I was suddenly aspirating everything I tried to eat. I have difficulty controlling the food when I chew and it slips down my throat before I'm ready. Not fun. Stopped eating after 50 events in 3 weeks and lost 25 pounds in a month causing Afib. Thought I had ALS, but two neurologists determined in was my HNPP. Too much chewing fatigues the muscles so I rely on liquid meals a lot. I've learned which foods are most likely to cause issues - lots - and eat with my head down. Eating is a social issue now. I don't eat challenging foods in public so I can focus. Nerves are easily damaged so my face once stayed numb for 9 months after dental work. In 2017, I took a strong antibiotic that did nerve damage and destroyed my sense of smell and taste to this day. My neurologist said it's permanent. Have metastatic breast cancer and was told the chemo for that would leave me in constant pain due to pre-x neuropathy. Using other meds. My heart goes out to everyone with this especially when you see it listed as just a nuisance disease. Most doctors including neurologists have not heard of it.

@mdllama
If you want to chat and are open to possibly coming to a neurologist in Philadelphia I can try to assist you. Are you on LinkedIn?

Can anyone offer suggestions on getting officially diagnosed and to see a specialist in this area? Maybe share your story? My primary care is clueless about this when I have brought it up to him but agrees, I have all the symptoms. I live near Johns Hopkins and can easily get there but it is impossible to get an appointment with neurology. My symptoms are progressing and am afraid I will loose mobility in both legs soon (already have in one). Time is not on my side. My primary care has just been treating symptoms with pain medicine for years. Never the cause, as it just continues to get worse.

Hi! I currently am taking Diazepam/Valium, Gabapentin, and get IVIg treatments every 5 weeks (3 days in a row each time). I also use medical marijuana. I do my own physical therapy, exercise and stretching. I also use heating pads on my neck/back and one leg. I find heated massage guns and trigger point massage tools to be helpful with my legs. Hot tubs, steam rooms, saunas and epsom salt sensory deprivation floats are helpful. I am also part of a bi-weekly support group call a friend found for me from one of the Facebook groups.

Welcome @bsnodgrass. I moved your question about treatments and medication that help stiff person syndrome to this existing discussion:
- Stiff Person Syndrome: Want to connect with others: https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I did this so you can connect with others with SPS like @sheeva888 @krb65 @franksgirl210 @bjm5501 @southerncharm @terlato @rivermaya34 and more. Click the link to read all the posts.

@bsnodgrass, when were you diagnoses with SPS? What treatments have you tried?