Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Stiff-Person Syndrome?

Discussion in 'Immunological' started by merylg, Oct 12, 2012.

  1. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    "The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain."

    "
    A study using the drug rituximab proved ineffective in treating individuals with the disorder. "
    http://www.ninds.nih.gov/disorders/stiffperson/stiffperson.htm

    http://www.hopkinsmedicine.org/neur...ections/conditions/stiff_person_syndrome.html

    Interesting treatments? Intravenous Immune Globulin (IVIg)....Plasmapheresis...Valerian...think I would avoid Benzos and GABA-acting meds...
     
  2. merylg

    merylg Senior Member

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  3. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    meryl Is it not that GABA is inhibited by GAD antibodies?

    Also interesting links to entero and coxsackie virus infection :

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921245/
     
    merylg likes this.
  4. merylg

    merylg Senior Member

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    "Benzodiazepines and other GABA-acting medications remain essential to managing the stiffness and spasms of SPS. If these medications are withdrawn from SPS patients, the muscle rigidity can be over-whelming and fatal respiratory compromise occur." :eek:

    http://www.hopkinsmedicine.org/neur...ections/conditions/stiff_person_syndrome.html

    http://www.ataxiacenter.umn.edu/aboutataxia/sporadic/gad/home.html

    Yes, stops you making GABA and in theory something like Gabapentin is supposed to mimic the action of GABA...but they don't really know what receptors it targets! Scary thought! Scary drug (I had a bad experience)...


    http://en.wikipedia.org/wiki/Gabapentin

    Thanks for the link, Marco.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    they think gabapentines effects are through its actions as a calcium channel blocker which can help turn down pain signals. I remember reading that they didnt think gabapentine had any effects at all on gaba receptors
     
    merylg likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    I am reviving this old post by @merylg and am very curious in "Stiff Person Syndrome" and if anyone on PR has ever been diagnosed with it, or had it as part of a differential diagnosis that was ruled out, or even had a family member or friend with it, etc.

    I was 100% certain that it did not pertain to me but am now starting to wonder. I see my neuromuscular doctor in about 2-3 weeks and plan to ask her more about it. I read a case study of a woman with SPS and she initially presented to the ER twice with shortness of breath and pain in her right arm (which are two symptoms that are fairly constant for me).

    The definitive test for her was sending blood to Mayo Clinic and being positive for the Anti GAD65 antibody which I have already done and am positive for it. In the case study the woman's Anti GAD65 was over 3000 and mine is only 1.6 (I think negative is below 0.02 or something like that) so I am definitive positive (and was positive on second test from Quest which is not even as sensitive as Mayo's) but I am nowhere like the woman in the study (although we had the same ANA titer of 1:160 speckled pattern).

    When I read the symptoms, there are some which I absolutely do not have but there are others like the exaggerated startle reflex which are really, really bad for me right now. When I am startled by something unexpected like a knock at the door or my dog barking (neutral things with no cognitive or emotional meaning) the reaction is completely over the top. It is purely autonomic/physiological. I was at an event a few weeks ago in which someone unexpectedly broke a mirror which scared the living crap out of me and the startle response lasted for several days. I can get tachycardia and angina from it but even without those, it feels like a shot of Epi to the heart/body and I am shaking and my muscles become abnormal. I had one episode last week in which my hands were curled into fists and it was challenging for my brain to tell them to uncurl. I also do well with benzos, and the meds that were listed in the case study that were prescribed for the woman are all meds that have been helpful to me, or are meds that I have never tried.

    I know this is a long shot and most likely is not my diagnosis and what ultimately helped the woman in the case study was IVIG (which I am doing now although at lower doses and frequency b/c it is all I can tolerate right now) and later RTX which I still hope to have the opportunity to try. I had a horrible reaction to steroids from my last IVIG (high dose Solu-cortef and Decadron) and will be trying IVIG #4 without any steroids (but back at lowest dose and slowest speed) but I'd require steroids in future if I do RTX b/c of anaphylaxis risk so it's very tricky.

    I would LOVE to be able to tolerate the 4-5 day in a row autoimmune dose of IVIG but at this point, my body cannot tolerate it so we are slowing it down. The slower rate led to a three week remission of my MCAS, so it clearly did something to my immune system, so I am going to go as low and slow as possible as much as I wish I could just jump in and do the high dose- I know my body cannot tolerate it.

    My gut instinct is that there is an autoimmune and/or neuromuscular cause of my shortness of breath and muscle weakness that is above and beyond ME/CFS. I was completely focused on the anti calcium autoantibody (that I also have) but am now wondering more about the other antibody, GAD65. I have rock solid diagnoses of both POTS and MCAS but there is something more that I am certain has not yet been identified.

    So I was curious if @merylg or anyone else had any thoughts or experience with this? Sorry that this post was a little bit jumbled and the part I am curious about was the Stiff Person Syndrome (SPS) and if someone could have a lesser version of it without having the full-blown obvious presentation?
     
    Last edited: Sep 22, 2016

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