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Stiff man syndrome

baffledbbaffled Posts: 375
edited 06/11/2012 - 8:48 AM in Chronic Pain
At my last appointment, my PM doc has put on the table "Stiff Man Syndrome". After reading about what this neurological, muscle auto immune disease, I am really hoping that is not what is my problem. My PM stated that I fit the profile, the only exception is my EMG only shows carpet tunnel (which i agrue with - perhaps they are mistaking that for the SMS). For the first time, he wanted to up my meds, which I refused. Lastly - two doctors (him and my RA doc) confirm that my spine has been completely straighten by my muscle spasms. I no longer have a curve, cervical, thoracic or lower.

Question - anyone here have that diagnosis, or gone down this path? Just looking for personal experiences.



  • Wow Patti >:D< I am so sorry.

    I just googled it. I found Stiff Person Syndrome. It says it is a progressive disease. The treatment is to increase the dose of muscle relaxer as the disease worsens (as it says on Wikipedia). What are you taking now? It seems you will want to keep th muscles loose in order to prevent further injury to your body.

    Maybe you can get more information from a specialist or a website (some times they can send you email news letters etc).

    Keep us updated. My thoughts are with you. It has been a long haul for you and I know you have been trying to get to a diagnosis for a long time.

    PS/ My PT said that the spine only looses the curve from the muscles pulling it that way.


  • for your input, non of the information i have found gives me a rosy outlook. The PM doc hasn't "signed off" on that, but I don't know why he would bring something like that up, if he wasn't heading there. His exact words were, I would like to put you into Stiff man syndrome, you fit the profile, except for the emg testing. I have 4 other auto immune diseases, including Lupus and the Graves Disease that they is related to the SMS. I also had childhood epilepsy. Most docs are not encouraging to up your meds either.

    He said just to keep doing what I am doing...which is really nothing, except taking meds. I can't do PT anymore, I just get injured. I am not on baclophen or any other muscle relaxer, just pain meds, anti malaria and non steriodal anti inflamatories for the lupus.

    Time will tell if this is my future and it is a scary one. I am only 44, a mother of 2 (10 and 9) and own my own gardening business. If this is what I have, I do hope that I am given enough time to get my ducks in a row, before things get really ugly.

  • Check out 'Stiff Person Syndrome' 'group' or 'cause' on Facebook... I admin the FB 'Cause' by that name; Mike West does the 'group'...

    You should see a Nuero & Rheum if you think you have SPS.

    EMG will be Zero if you have been on rituxin or some other Gabageneric drugs; but you should have tests for GAD65 antibodies (I am EMG=0, but GAD65ab=23 where 0-1.5 is normal; 5 = diabetes, and anything higher, w or w/o diabetes, thyroid, etc. is considered proof of SPS. 65% of SPS'ers have GAD65 results; there are also 2 other autoimmune antibodies which may show up.

    Some SPS'ers have 0=EMG 0=GAD65ab, etc. but STILL have the disease, simply by process of elimination. Nueros and Rheumatalogists do reflex testing, etc. and there is no other disease that quite matches it...
  • by your screen name, you must have the official diagnosis of sps. Thank you for your input. I have not had the blood work done, of gad65. other antibody test come back in abnormal, hence the lupus diagnosis. But my PM doc won't sign off on the lupus. He is worried that what is going on with me would just get blamed on the lupus and never be investigate. He is the one who has put sps on the table.

    If you don't mind me asking some questions: how long have the symptoms been going on? What stage are you in? What are your symptoms?

    I recently had a nuclear bone scan that verified that I cracked my rib. It happened a couple years ago, while I was driving my truck. I knew something horrible happened that night. The pain was unreal (while I was going 65 mph on the turnpike). Driving is the worst, any sitting for long periods of time. I have lost any position to sleep in. I can't lay on my stomach, my lower back won't bend to allow this to be comfortable. On my sides I get sore after awhile, like I am laying on a hard surface. My bed is pillow topped, with a cushion mattress pad and lastly has memory form mattress topper. Can't figure that out. I haven't been able to move my neck to my waist since 07. The lupus meds have helped my hips and knees.

    Sorry this is so long, just haven't meet anyone who actually has sps, and i am very curious. Thanks for you input and if you are able to share your story with me.

  • Basic information: google 'Yale' + 'Stiff Person Syndrome'; then same with 'John Hopkins' and 'eMedicine' SPS pages. Look on Inspire, call NORD, or the various Facebook pages under 'groups' or 'causes' (some of these sites are OK and active; others are not. I post a lot of articles on my SPS site URL Removed.

    Current literature says that 65% of SPS'ers have elevated GAD. Luckily for us, there is now a fairly common test for GAD65 that labs run for endocrinologists for diagnoses of diabetes. GAD65 attacks pancreatic beta cells that regulate insulin. We SPS'ers generally have GAD65ab epitope (a variety that is picked up by the cheap/common GAD65 test)

    Oversimplifying: epitopes are like different varieties of Tide, Tide with enzymes, Tide with bleach - or different blends of gasoline, ice cream brands, etc. They all clean clothes or whatever, but they have different arrangements... GAD65 may be arranged with ingredients 1,2,3,4,5,6,7... GAD65ab is slightly different - 1,6,7,2,3,4,5

    GAD65ab attacks brain neurons expressing GABA regulation. As a bonus, if you have SPS, you also have a 50%+ chance of diabetes, thyroid, breast problems from GAD65ab.

    My nuero first ran the GAD65 test with LabCorp, than sent off for a second test (to either Yale or John Hopkins - I forget which) for the expensive GAD65ab test. That test not really necessary; if you have GAD65 levels over 5 - and some of us go into 1,000 range - and SPS symptoms, you have 99% SPS confirmation...

    So I'm suggesting you see a Nuero, Rheum, or Endo that do GAD65 tests and knows how to read results and confirm your symptoms.

    I get drugs to increase GABA in brain - diazapam, gabapentin, keppra.

    Complimentary approach:

    I also take stuff to kill/dilute my autoimmune B cells. Rituxin is a monoclonal Anti-B cell drug that kills off mature B cells that attack your neurons. NIH tests found this to be a 'failure' in that it only worked in 4 of 12 in test. But if it works, it works great - I can walk without cane, drive, sleep normally, etc. You can take it every 6 months and it works well for middle 4 months for me. Downside: you can't take live vaccines while on Rituxin.

    IVIg transplants IG from 200 people per bottle, and I get 4 bottles; results work about 6-8 weeks, tops. One of those weeks you may feel flu-like.

    There is also aspherisis, which I'll over-simplify - takes blood from one artery, spins out bad immune cells, puts blood back into a vein, repeat...


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  • I had the GAD65 test done about 2.5 years ago and it's one that can't be done at most clinics. It has to be sent off to a specific lab. It was ordered by a neurosurgeon who was trying to eliminate as many possibilities as he could for my muscle spasticity issues.

    Don't let this all get you down. If they can figure out a reason for your issues, at least the correct treatment regimen can be started for you! You have struggled way too long and hard to give up now. Hang in there!

  • I am not trying to let this "possiblitly" weigh too heavy on me. For the first time in this long journey, I have to admit, that I am frightened of either outcome. Frightened if it is sps and frightened if it isn't.

    What is good these days, both my PM and RA doc verify that something is very much going on with me. That my truck, axil muuscles are ridig, woody and have straightened my spine. It feels good to be validated by my physicians.

    Thanks for your comment,
  • I think I may have this. When I get up in the mornings it's take over an hour for me to fully upright, Beside the low back pain due to my L5 disk (I take my 1st pain pill) when I first wake and it take an hour for the pill to take its' effect.
    I told the Dr about this but he just shrugged it off and told me that;s part of getting older. I wish when the Doctor doesn't know that they would just say " I dunna know".
    C3-4-5 fusion 2005
    C-5-T-1 disk bulged
    L-4-5 bulge to the right, with Microdiscectomy, failed
    L5- Bi-Lateral bulge
    Pain in right foot -loss of feeling
    Left butt, hip and front thigh pain with bad shooting pain into inside ankle sometimes
  • I hope you don't have this but it takes many opinions to get this diagnosis. Do you have pain in all 3 areas of your spine? I hope that whatever the outcome of these tests that you don't have it but know that we'll be here to support you. Take good care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • yes, the whole spine is effected. This all began with thoracic pain, grew to my neck, shoulders, and over the last year, the lower spine has been included. The flatting of my spine thru all areas is what has gotten the doctors attention. I geet spasms in my legs, and arms, more to the left than right.

    At the beginning of 09, I had 4 injections of Botox into my Trap muscle. Within the month I was being examed, and the muscles were noted as woody, rigid and in spasm. I cannot do PT, I have ended up not able to use my right arm last time, the pain so bad. I was unable to brush my daughters hair, use a computer mouse and so on.

    Truely, it is not what someone would want, and it is very rare, and they haven't tested my blood, so we are still at the early stages...i guess fortunately for me I do already have all the right docs, Endo, RA and PM. Over the years with this, I have had some blood work done that was unusual, just pieces of what can be apart of this. High pancreatic numbers, lack of oxygen in muscle, high sugar in urine and so on. I had childhood epilpsy, and have all the other auto immunes that are related to this. And about 2 years ago, I broke a rib while driving (confirmed by a bone scan).

    Thank you for your support, I am still in this holding pattern. Do what you have been doing, is what the doc said, and call if i need to change my meds, or see him. And the saga continues.

  • hello again, I have recently been evaluted by a Physical Therapist who specializes in the back. Here are their findings:
    1) significant flattening of the thoracic spine. As a result the rib cage has been moved.
    2) Lower Lordosis curve is too high, it is in the lower thoracic portion of the spine. Thus, the pelvis is out of alignment.
    3) The muscle rigidity of the upper back and neck are not consistent of misalligned spinal issues. His statement, "I have not run across this type of muscle rigidity before"

    I am to see my pain management doctor on the 25th. I hope at that time, he feels inclined to test me for the SPS. At least I may have better medical plan than the one I am currently doing. which is basically just controlling pain.

    It feels a little like I am grasping at straws, but I am getting so tired of hearing, boy I have never seen muscles like that before, yet having nothing to concrete to do about it. It would seem like, hey let's get her back back into allignment, but this really just injures me - last time I did PT (last winter) the PT treated me as a "muscle client" I became so injured I couldn't use my right arm to brush my daugter's hair, open a door or the computer mouse. Wish me luck, and I will update after the appt.

    This is a rare disease, but I do have some of the markers, spine movement, TSH levels that don't make sense and a list of other auto-immunes, that seems to be the cousins to this disease.

    thanks for listening, patti
  • hi all, wondering if any of you are all still active - I know this discussion has been inactive for quite a while! this is the only place where I have been able to read about gad65. I am 19, and have NO symptoms of sps but I do have a positive gad65 result over 30. I also have type one diabetes. My neurologist has suggested that either this is something that will progress into sps or is completely due to the diabetes, though I am under the impression that gad65 results this high are not caused by diabetes. do any of you guys have any experience with gad65 results before the onset of symptoms? 
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