r/StiffPersonSyndrome

Please give some sort of a timeline, my neurologist been no help in this.

Thank y'all in advance!

I’m writing a goodbye and a thank you. I spoke with neuro immunology and based on how low my GAD was from Mayo, and my negative CSF, she felt confident that I didn’t have stiff persons.

I don’t know why I have so many muscle spasms. I don’t know why I lock up. I don’t know why any of it happens or looks like SPS, but she wants me to see the movement disorder clinic. Between the ataxia, having Tourette’s, hyperactive reflexes, and having had dystonic reactions to meds, she feels something genetic or something in the dystonia family is more likely.

It’s odd to be disappointed but Valium was working, and I truly felt confident after the initial GAD, but she said if it’s not over 10,000 on that test (if only goes to 250) and the Mayo test was low, and I didn’t have any abnormalities in my CSF, it’s not SPS.

Whatever it is you personally send, thoughts, prayers, vibes, whatever, send them my way. I can’t keep having these episodes, and haven’t been able to go to a gym in a year because of the shaking and spasms it produces.

Hey guys.. looking for advice about GI symptoms. Since January, my entire GI track has been incredibly slow to the point I’ve lost almost 50 pounds ( was packing extra).

Anyone taking Reglan ?

I’ve found other SPS patients more helpful than the doctors. Thx !

Does anyone else have episodes of EXTREME panic, nausea, autonomic disfunction, etc, that come with a spike of 10/10 pain?

During these episodes, I’m not necessarily spasming/stiff. However, my pain - deep, visceral, always one sided - worsens horribly (I wonder if this pain is deep rigidity?) I have baseline pain throughout the day, but these episodes are a complete nightmare. They last anywhere from minutes to over an hour.

I’m being treated for SPS, but still not sure how many of my symptoms are from this or another problem. Does this sound familiar to any of you? I’m so scared lately. I’ve had panic attacks for years, but these are something different. They truly feel neurologic. If anybody deals with this… how? I live at home and my mom has been bringing me ice, which may help a little. Extra Baclofen too, and I’m not sure yet. It’s hard to tell if something has finally helped or if the episode has run its course, you know?

Hi everyone,

I was diagnosed with Stiff Person Syndrome in March and I'm now on month 4 of IVIG. Since my diagnosis, I haven't traveled or really been out in crowded public places.

My family wants to go to Disney, and I really want to be there with my daughter and make those memories with her. At the same time, Disney feels like one of the worst possible places for someone with SPS.

I'll be using a wheelchair, so walking isn't my main concern. I'm more worried about muscle spasms, sensory overload, fatigue, crowds, and whether I'll end up spending the whole day trying to manage my symptoms instead of enjoying the trip.

Has anyone with SPS been to Disney or another theme park? Was it manageable? Any tips or things you wish you'd known before going?

I'd really appreciate hearing about your experiences. Thank you.

TLDR: yes or no to a Disneyland trip with SPS