Undiagnosed Autoimmune with back pain, spasms, and stiffness

I would investigate POTS, Postural Orthostatic Tachycardia Syndrome. Usually, this causes a multitude of symptoms but is not known by most medical providers. It is disorder that causes problems with blood flow and tachycardia. If you feel lightheaded and have unrefreshing sleep after waking in the morning and it gradually improves throughout day, that is typically an indicator. The longer you stay in bed, the worse it would get. If these symptoms don't sound like a match, I would look at other central and peripheral nervous system problems.

I have dealt with pelvic pain the past 18 years, diagnosed with vulvodynia, many medications over the years and been referred to several out of state OBGYN specialists, acupuncture, physical therapists, had chiropractic care. None have given no relief to my pain with the terrible spastic pelvic floor feelings of constant pain 24/7 during these years with sitting and lying down. My central nervous system seems to always be in "overdrive: I am a 75 year old woman and this began when I was 58. I was referred to a neurologist two years after the symptoms first started, MS was ruled out, my reflexes were overactive, and my Antigad antibody level was 0.04 at that time. A mild case of Stiff Person Syndrome was mentioned then, but stated that it was not a conclusive diagnosis, but having the antigad number was "interesting". Baclofen, diazepam and several medications were tried during several months and did not help at all. Then referred to the same neurologist seven years later, Antigad antibody level at this time was .011, and the neurologist said he did not think the reading was suggestive of a stiff person syndrome, but "was interesting". Then referred to him again recently. MRI's were taken of my neck and back this time and were normal other than age related degeneration which is considered normal for my age. He did not do blood work on my recent visit, and gave me a prescription for Diazepam 2 mg. to take 3 x daily. It isn't helping. I see him again in 2 months. He now is treating me for "perhaps" a "mild case of stiff person syndrome." My symptoms still remain the tingling in my entire body from head to toe (no shaking- just always conscious of the tingling sensations), this terrible pelvic pain with sitting and lying down, and some stiffness within the last 6 months or so when getting up in the morning, which I attribute to age related arthritis, perhaps. My lower back now hurts and the pelvic pain and tingling now extends down both legs and into both feet. May I ask what was or is your AntiGad 65 level? (My sister died at age 56 with a paraneoplastic syndrome that was caused from stage 2 carcinomic lung cancer of which she was in remission after 2 months of aggressive chemo and radiation treatment. She never felt better after the remission and it was found that she ah the Antigad .Anti-HU gad that was discovered a month before she died). I wish there was more input within the Mayo Clinic Connect site regarding Stiff Person Syndrome. From what I am researching, I understand that this is a rare autoimmune disease. Have you been treated at Mayo Clinic? At this point, I am still unsure if I do or if I do not have Stiff Person Syndrome.

Hi, @judyannmac - welcome to Mayo Clinic Connect. It sounds like it's been many years of pain and uncertain diagnoses. I've experienced pelvic area pain only with post-prolapse surgical repair, and it's a very tender area and a reverberating pain.

There are members of Connect talking about stiff person syndrome in a thread in the Brain & Nervous System group that you may want to check out https://connect.mayoclinic.org/discussion/stiff-person-syndrome/.

You may also be interested in this Mayo Clinic story about a patient diagnosed with stiff person syndrome https://sharing.mayoclinic.org/2019/04/08/rising-above-a-rare-debilitating-disorder/?_ga=2.71268176.1598879030.1583163810-1932626024.1568081026.

My spouse had very similar symptoms x 15 years of testing. He took his records, including copies of his mri not just the report and was diagnosed with ms. No to say that is what you Have, but maybe a new set of eyes on your results.

Hello @glennaskinfolk -- Welcome to Connect. Thank you for sharing your spouse's experience. It's great advice to seek a second opinion when you are unable to get the answers you need or the treatment doesn't seem to be working. How is your spouse doing now with MS?

He. Is doing well. Into his third year of ocrevus for PPMS with no new lesions. Started The Wahls Protocol last June which has helped with fatigue and insomnia. He no longer takes sleeping meds. In fact, Vitamin D is his only med besides the Ocrevus. Walk or bike several miles per day. He still has the nerve vibration especially on waking. I am searching for clues or hints of what could help. It averages 3-5 on a scale of 10.

Hi!
I had they same symptoms and ended up I had stiff person syndrome. But it took about 4 years to find out. I had two back surgeries and I still continued having real bad spasms and they couldn’t figure out the problem of why I continued with spasms. So, I saw a good neurologist after seeing several doctors and they didn’t know what I had. But, I’m glad Doctor Suzanne Gazda was able to figure out the problem. I’m so great full she was able to help me out.

@glennaskinfolk, I'm not sure if you were aware of these two sites for PPMS. They might provide some help.

National MS Society - Treating PPMS
-- https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Treating-Primary-Progressive-MS

Medical News Today - What to know about primary progressive MS
-- https://www.medicalnewstoday.com/articles/315475

Another good search tool is Google Scholar - https://scholar.google.com/

I do receive newsletters from the ms society. Will search the other two. Thanks so much!

Sylvia, do you recall what eventually led to your diagnosis of stiff person syndrome? Years ago my Antibody (GAD65) was 0.04 from bloodwork in 2004. In 2011 it was 0.11. Neck and upper spine MRI's done earlier this year were normal for my age (75). All my pelvic pain spasms began in 2002 and continue to now and are continuous when sitting and lying down. The pain is almost unbearable. My OBGYN diagnosed me when this began as Vulvodynia. However, he always said I have something else going on, since no medications and other modalities have helped. Was your stiff person syndrome diagnosed by bloodwork for the antibody listed above? I have dealt with this pain since 2002. If you were diagnosed from the antibody number, do you recall how high your number was? The neurologist did not do bloodwork when I saw him recently, only the MRI's. He has me on 2 mg. of Diazepam taken 3 times a day. It isn't helping with pain. My reflexes have always been overactive in my knees the 3 times I have been referred to him over the years. I have even taken up to gabapentin 3600 total mg per day in the past. At one time I took Lyrica 600 mg. per day. Still no relief. Many other medications through the years through other specialists my OBGYN has referred me to. The neurologist is treating me for a "suspected mild case of stiff person syndrome" due to the old two antibody numbers..