Stiff Person Syndrome: Want to connect with others

The Stiff Person Syndrome Research Foundation (SPSRF) is a great resource. Based out of Bethesda, MD. Tara Zier sees Dr. Scott Newsome at John’s Hopkins.

Also, you could check out the NIH and NORD websites. As well as searches for medical articles on PubMed and Google Scholar.

I see Dr. Marinos Dalakas at Thomas Jefferson University Hospital in Philadelphia, PA. He is one of the doctors on the foundation’s medical advisory board. He has been studying SPS for a very long time and continues to. He has published many studies over the years.

I am currently taking diazepam, Baclofen, Gabapentin and monthly IVIg infusions in-home (3 days in a row each time). I also use medical marijuana for anxiety and to help take the edge off the pain. I practice my own physical therapy (low impact exercises, stretching, some yoga poses) at home or walk outside when possible. Pool exercises are good in the summer. I find hot tubs, saunas, steam rooms and epsom salt sensory Deprivation floats to be helpful. Of course I have heating pads, vests, and wraps all over the house.

@sheeva888, @ingritamoreno, @johnbishop, and all...Well, you are wonderful! As always, the dear folks on the Mayo Connect site always hear you and reach out with caring and great information and support. Thanks to you...

Since I sent my message asking for help, my son has received a report from his new neurologist, a wonderful doctor who first diagnosed and treated him 10 years ago, after 10 years of horrible medical treatment with no diagnosis and no treatment other than opioids and accusations of drug shopping. Those days left a deep mark on him and he has trouble discussing with doctors openly about his real levels of pain, various symptoms, and emotional issues. He has severe trust issues with the medical field after so many hellish years with no help or apparent caring. He's now back with the original neurologist who's very much up on developments in brain health and treatment. Including possible infusions!!!

The report indicates strong suspicion of Stiff Person Syndrome, with underlying Dystonia and other autoimmune involvement. It all makes sense now. I have several autoimmune diseases that have hit me hard and been challenging...first one is Sarcoidosis at age 40! His Dystonia hit him at age 35! Wow...what a bit of historical insight.

He has ordered a list of bloodwork testing including the ones you've mentioned and others. I've ordered all hospital and doctor records from the past several years and the imaging unencrypted to send to this doctor.
They are advising him to increase gentle activity which was impossible until this month since I helped him taper off Tizanidine and onto Baclofen. What a job, but what an improvement in his movement ability, reduction of pain, control of muscles...and naturally his mental state. Currently, he's on Seroquel for sleep and anxiety, but you are taking diazepam...are you finding it helpful?

His sleep is quite a mess, for many years he woke up screaming with terrifying night terrors and had few nights with peace. Now, with Seroquel and the changes in other meds during the day, he gets several hours of good, restful sleep every night. Also, he has a precious Havanese dog, only 8 pounds, who is his best and only friend. She is truly a therapy dog, helps him relax, and feel loved and they have a friendship, and partnership that works miracles. I'm applying for a therapy dog certificate to make it official and help him take her wherever needed.

He is now walking the dog more often, actually going into our pool now for the first time! After I shared some things I learned from the PT in my therapy pool sessions, he's finding the water and heat a great help. He was attempting to swim in deep water, causing increased electrical currents throughout his body. By holding on with his one usable hand/arm in the shallow end, standing with good balance, he simply walks in place allowing the water to move around his body massaging and doing its thing, and his legs are getting a good workout. He mentioned last night he's feeling stronger, his legs and calves are stronger. It's another miracle...

He's lost 10 pounds, intentionally, in the last 2 months, by improving his eating of course although he eats a well-rounded diet, drinking less caffeine sodas!!!, increased exercise, more general movement even standing and moving while listening to music or watching tv. He's now able to do these things with the med changes!!!

This doctor also addressed my son's several vitamin and mineral deficiencies. His body doesn't absorb B12, B6 is low, D is low, very low Testosterone, low magnesium, and others. He may have some infusions to help with some of the deficiencies and also possible inflammation in the brain. He takes Cerefolin, a superb prescription supplement for low B12 and it addresses other brain issues. It's one of a kind, difficult to get, and quite expensive not covered by insurance...$250 for 90 day supply. We just found the manufacturer and get it for $199. directly from them. Only took a decade...but, who am I to scoff at another miracle. They seem to be flowing into both our lives for several months in multiple areas. I'll be in touch soon after learning more...

Gratitude is overflowing in our lives right now!!!! For you and his new doctors and my doctors and help with his life for the future. I'm so thankful to my God for guiding us to the angels in our lives, helping us so much.
Blessings to you all...Elizabeth

@sheeva888, and all...Thanks so much! Great info for us. May I ask about the IVIG infusions...I had them several years ago in 3-day sessions as well, for what was believed to be Myasthenia Gravis. I don't have it, but do have double vision and other symptoms. The infusions actually helped me a lot even though not for MG. What are they using them for in your treatment? Helpful? How?

Also, is Gabapentin helping you and why are they using it for you? I also took it for years for pain and such. I'm off it thankfully, as it caused brain fog and some other issues, but I was grateful for the drug. It makes sense for my son to take it as it addresses nerves directly and his new doc mentioned he may try it.

I was also on Lyrica and several other heavier drugs that I'm now tapered off for a couple of years. I deal with pain with Medical Marijuana, as does my son, and steroid cream/Voltarin/magnesium creams....using more topical medications now to avoid my gut and absorption issues. With Robaxin, Duloxitine, Xanax, and CBD gummies. A good cocktail of various types of relief...(no alcohol.)

Thanks again and be well, be blessed...Elizabeth

So glad to hear that things are moving in a better direction. It is a multi-faceted approach to deal with SPS.

Some patients find cold plunges, acupuncture, and Botox injections to be helpful as well. They make me worse.

I haven’t heard of anyone taking Seroquel for SPS before. Interesting! It is an antipsychotic mainly used for schizophrenia and bipolar disorder. I do see some doctors prescribe it for sleep issues. Diazepam is typically the first drug doctors try to see how patients respond. I have atypical SPS, meaning I don’t have any if the major antibodies. Since I was healthy otherwise and all tests came back negative for a slew of conditions, the doctors started me on Diazepam and my body showed changes within a week. Benzodiazepines allow the muscles to relax. However, many doctors prefer Baclofen over Diazepam as it is less addictive. Diazepam makes some people sleepy and others more energetic. Baclofen is personally less effective for me and makes me tired. I use THC to fall asleep and sometimes take extra Baclofen in the middle of the night if my body becomes restless and internal tremors creep in.

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.

@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

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

@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…

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 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?