Mayo Clinic Connect
Am interested in connecting with people who have this or are significant others of people who have this condition. (I’m in the latter group).
Liked by mcrchicago
What symptoms does your significant other have?
Hello. My sister was diagnosed with stiff persons syndrome about 4 years ago at Houston Methodist in Houston Texas, and it is hard to get a physician to help her. She has tremors that last for hours and will only be helped with Valium. I called John Hopkinsin Baltimore to ask for help, they said they would make an appointment to see her, let's hope that works out.. Right now she is trached because she has trouble breathing and they won't see her until she is released from therapy. We live in Louisiana in a rural area so our options are limited. I read on many sites medicinal marijuana helps allot. Praying for everybody with this disease !!
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Please keep in touch. I hope her symptoms improve so that she can go to Johns Hopkins; and then I hope Johns Hopkins can help. I have seen online that Dr. Eric Newsome actually has an SPS Clinic.
No, I have not. For now, I am in a good space. Unless something comes along that does not produce side effects more problematic than SPS, I plan to stay with my regiment.
What is your current regimen, which appears successful?
Hi, @peggi – I would like to add my welcome to Mayo Clinic Connect. Sounds like you are having some walking trouble from your stiff person syndrome and are looking for other treatment since a shortage of immunoglobulin led to discontinuance of your therapy.
Hoping that @suzanneleafbrock @trs @fivets @ndville @stiffpersonsyndrome will share about the symptoms they or their loved one has experienced and also what regimen they are on and its effects, as well as offer their support. @hopeful33250 also may have some insights.
When is your upcoming appointment with the neurologist at UW Hospital in Madison? Are you having other symptoms beyond the walking challenges?
Hello. My husband has stiff person syndrome and tried numerous treatments. It does seem to be a trial and error for various options. Back spasms, tiredness, some gait issues are/were all issues. He also has experienced startle response issues that would cause spasms. Baclofin did not help him. He tried plasma exchange and after the first two, that was discontinued because he did not respond. Keeping his back really warm and sleeping a lot are two things that seem to help him that are non-prescription based. He also is an advocate of stretching exercises. I hope this helps and all the best to you.
Liked by Lisa Lucier
Thank you, this is more helpful than anything doctors have done for me. Thank you.
I had my appointment with the neurologist at UW on Thursday, and she increased my IVIg to every 6 weeks. Hopefully there will not be another shortage.
No: My only symptom is loss of balance especially when walking outdoors: slants, curbs, gravel. I can walk 3 miles in 45 minutes with the use of walking sticks though. No pain. No startle reflex. If I stop to chat with someone, though, I am really stiff until. I walk a few steps though. Oh! And being cold really causes me to stiffen up. I feel like a statue.
Hello, I work at Mayo Clinic and my husband was diagnosed here with stiff person's syndrome. The definitive diagnosis came from a blood marker they found. I can't think of the name of it at the moment, but if you have it, then you have stiff person's. I don't know why your neurologist referred you to oncology, but perhaps he wanted to rule out that there wasn't anything else going on. It is a very difficult disease to manage and lots of rest, lots of heat (wearing layers of clothing) seem to help Tony in addition to the medication. He went through plasma exchange and it did not help, they help some people but not others and there doesn't seem to be a reason why that is known at this time. Wishing you the best.
I was diagnosed with SPS with the finding of an elevated GAD antibody (1,451), My antineoplastic antibody titer was negative, as well as a normal colonoscopy, a negative breast biopsy, normal full spine MRI, negative head MRI, and several referrals to vestibular rehab, a spine specialist….I think that’s all. I was not referred to an oncologist.
I wish we could establish a method of discussion other than all of this typing; e.g. arrange a meeting place, a secure method of getting phone numbers via a Mayo facilitator, etc.
see if they set up a video chat room lol
Why is that funny? I think talking to others with SPS might come up with ways to deal with our balance issues.
@peggi, I too have balance issues. There is another discussion on Connect that may be helpful for those facing balance issues.
> Groups > Healthy Living > Having trouble keeping your balance?
Talking to others with similar conditions and symptoms can be helpful. Connect provides a Private Message function so that you can send messages to individual members to exchange information which can include email and phone numbers if the member wants to share and have a discussion by a phone call. The Get Started on Connect guide has all of the common "how to" tasks. There is a link to the guide in the left column of the footer on each page on Connect. Here is a link to the Private Message section — https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
Hi @peggi, currently Mayo Clinic Connect is a text-based community. Of course, videos, images and documents can be attached as well to text responses. Video and phone applications are being explored for the community as well. A solution in the meantime might be to consider a Voice-to-Text application. Here's some information if you wish to look into it. https://www.thebalancesmb.com/best-voice-to-text-apps-4583053
Do you use or have you looked into voice-to-text technology? It has gotten quite good over the past few years.
Liked by John, Volunteer Mentor
Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.
Sometimes, rarely, SPS is triggered by tumors that is why the neurologist refered you to a cancer specialist. If the tumor was taken care of, then SPS would likely go away.
I’ve had symptoms since early 2016. I have overwhelming stiffness that affects my back, lower legs, and feet and also have muscle weakness. I thought ALS, but had normal EMG tests. I tend to think it could be Primary Lateral Sclerosis, which affects the upper motor neurons rather than ALS (which affects both upper and lower). Often PLS can turn into ALS. PLS can also take years to diagnosis. In late 2017 my neurologist went with SPS based on really high GAD65 blood test (and am being treated with Valium and baclofen). It was over 3000, when normal is 0 to 5. Does anyone else have a SPS diagnosis with normal EMG, but high GAD? I don’t suffer from the extremely painful spasms that are often attributed to SPS. I think my symptoms point more to motor neuron disease, though i’d much rather have SPS. I have mild muscle cramping. I’m not sure if I should go to John’s Hopkins or wait it out and see how it progresses.
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