Stiff Person Syndrome: Want to connect with others

@ellenanne33
I am so sorry to hear about your husband.

Neurologists who specialize in movement disorders have a 7 month wait for an appointment…I’m stunned! I can’t wait that long…

All therapies have not help my husband 1st responder fdny on 9/11 and plance crash soon after that went down in the rockaways queens ny .he has has ivig ,plasmapharesis ,rituxamab and last cytoxan only to have multiple pneumonias and sepsis and now back in hospital for clots in lungs .any help out there .much appreciated as nyc has been no help at all !!

@sandra319 I’m desperate to compare notes with someone who has been officially diagnosed .

This is what has be happening to me. If I feel the least amount of anxiety, or stress my neck tightens, my entire arm, hand and fingers spasm very quickly. The spasms spread to my other arm, neck, lower back, both legs, and down to my toes. Sometimes my head starts to shake too.
The most fearful time is when I have been standing usually in one place and my back tightens up and becomes very painful. At that point, I MUST SIT DOWN. Terrible pain that causes my voice to change as I cry out. Of course the spasms sometimes don’t show up. After an attack, I am totally exhausted.

Does this sound familiar?

That sounds very unpleasant. I am sorry you had to endure that. Spasms are so incredibly painful and scary. It’s a long list of tools in my toolbox, but without a diagnosis you won’t have access to a lot of my tools. In the interim, most SPS patients find heat to help. Heating pads, hot tubs, saunas, hot baths, infrared sauna bags to use in home, etc. Also Tylenol and THC (if you are open to that) if you have not been prescribed Valium yet. Low stress, quiet, and lower lighting help. Sometimes light stretching. Heated massage guns, if tolerable. Massage therapy, light or deep depending on what your body can handle.

Try to keep a journal of symptoms and take videos and pictures as things happen.

I hope this helps and the new doctor can get you a proper diagnosis.

@sheeva888 I’ve been seeing a neurologist for years. The issue with me is that new neurological issues keep popping up and possibly overlapping.
I saw the doctor today. While I was there my body was in a full spasm. I was like, “what is this!” He said you are having spasms. It’s not Parkinson’s because I move too fast.
These spasms are getting worse all the time. I feel like there is an electric current running up my toes to my head.
I was referred to a movement disorder specialist neurologist. So now I wait for the to call for an appointment.

I hope you are doing well. What do you do to feel a bit better?

Hi,

So sorry to hear you are juggling so many things. Where are you located? Have you seen a neurologist yet? Have you tried Valium/Diazepam yet? I am not sure how that interacts with your dementia. I hope you have an advocate by your side.

@sheeva888 @ess77
Hi I’m looking at the Stiff Person Discussion.

I believe I have it based upon the physical external, and internal tremors I have been experiencing over the last month.
The drugs I’ve seen listed by others are not compatible with daily life for me. One Baclofen at bedtime knocks me out for 10, and
I’m tired during the day…

I also have Ataxia, and dementia…

elizabeth, is there a mayo clinic support group you recommend for arm dystonia for many years and now have pain in that arm?

@sheeva888, and all...You are a wonderful help with your wealth of information.

He takes Seroquel for sleep and to help settle his mind. He was on Klonopin for several years and it was quite helpful, but a horrid nurse practitioner was video visiting with him during covid, didn't know nor understand his illness, and for some reason stopped cold his prescription of Klonopin. I worked for weeks to refill it and never understood the reason...nor does he. She no longer works in the field. Had he died or not already been on disability, he'd be a very wealthy man today. Since he was on 100% disability and only came close to dying from the sudden withdrawal, we couldn't mount a lawsuit.

He had every withdrawal reaction listed from the sudden stopping of the drug. I found him unconscious on the kitchen floor, he had severe seizures for the first time in his life, his heart was affected and he spent 4 very difficult days in the hospital recovering. He's still recovering. This abuse caused severe harm to him mentally and emotionally, as well as physically. He doing much better, but the Benzos are not on the plate any longer. Shameful and sad as they did help. But, he's doing ok on the Seroquel, although I think perhaps the new doc will adjust or change that med as we go.

Baclofen is excellent for his body. It helps release the tightened muscles but we're not at the optimum dosage yet. He's added another midday pill and perhaps is perfect soon. I find Robaxin helps me, but I don't have the same tightness as he.

THC is very helpful for him. It relieves the pain and helps release muscles as well. He hasn't found the best delivery system for the THC now the best blend, but hopefully will with time.

Botox saved his life when he first received injections, 10 years ago. His doctor then gave him injections in his back/neck/shoulder/ eyes/jaws/ and pectoral muscles. For the first time he says in his life, he took really deep breaths and could breathe more easily. He's not getting the chest injections now and misses them. Needs them. Botox works wonders for him.

Cold works against his body. He doesn't do well in cold climates now, even though he used to live in snow country and loved skiing, etc. No more. Florida is perfect for him. Acupuncture helps a bit. It depends entirely on the therapist and on other treatments he gets at the time. Don't know if it's an ongoing positive. Deep, deep massage is a miracle treatment for him but he doesn't get enough sessions and hasn't found the right therapist yet. Still a work in progress.

Thanks for the sharing and information. I'm encouraged there is help available now. Not a cure, we're way past that illusion but had given up on improvement at all...Today we have a sliver of hope he may have the ability to live a more mobile life with less pain and the ability to care for himself longer. All these are so important!!!!!!

Blessings again and I'll be in touch...Elizabeth

Studies show that IVIg may slow the progression of SPS. My neurologist recently published a study that shows IVIg is typically effective in patients without allergic reactions and tolerance for about 3 years. After that time, some patients notice a waning affect, which I have. However, I know it helps because my dose was cut in half as an experiment for 3 months and I started to need a mobility aid. It allowed me to stay up a bit later, walk better, and generally improved quality of life. It took 5 months before I noticed a difference.

If patients can’t tolerate IVIg, doctors may try Rituximab and/or Plasmapheresis/PLEX. These are a bit more serious and may require hospitalization. Most insurance companies require trying IVIg before applying for other IV treatments. Even then it might be a battle for approval.

My neurologist likes to do an oral med combo of Diazepam and Baclofen or Diazepam and Gabapentin. I am on all 3 as he doesn’t want to increase the Diazepam. I am on 20 mg total a day without an increase for several years. Most patients I know take 30-40 mg per day along with other meds and IV treatments. I don’t find the Gabapentin to be very helpful.

I know one patient that uses Robaxin and she finds it very helpful.

I suggest trying things one at a time to evaluate effectiveness and side effects. Every day is basically about self-care for me. Everything I do is to help with pain, tightness, anxiety, fatigue and depression.