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Thread: Facts about Stiff Person Syndrome

  1. #41
    Distinguished Community Member Sunshine's Avatar
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    Fact #32

    There are two main approaches to Treatment of Stiff Person Syndrome:

    1. GABA enhancing drugs such as Baclofen or diazepam (such as Valium)

    2. Immune modulating treatment, usually IVIG

  2. #42
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    Fact #33

    With respect to IVIG infusions, Some people are not able to tolerate infusion-related headache, nausea and vomiting, as well as fatigue, fever and other possible side effects. For many, greatlyslowing down infusion rate prevents side effects. Some patients premedicate. Other strategies are used PRN prescribed by the neurologist.

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    Fact #34


    Both Tetanus and Stiff Person Syndrome affect peripheral inhibition via central nervous system mechanisms and both conditions inhibit central gamma-aminobutyric acid (GABA) systems.

  4. #44
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    Fact #35

    5% of people with Stiff Person Syndrome have cancer as the causative agent of their SPS. Eradicate the cancer and the SPS goes away.

    Dr. Newsome does full body PET scans to detect hidden cancers for his SPS patients.

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  6. #45
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    That's a scary fact but good to know the sps would go away.

    ANN
    There comes a time when silence is betrayal.- MLK

  7. #46
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    Fact #36

    Although typically the statistic about the incidence of SPS is 1 in a million, Dr Newsome’s Johns Hopkins website estimates it at 2-3 in a million. (That seems more plausible based on my casual observation)

  8. #47
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    Fact #37

    According to NORD, National Organization for Rare Diseases, there are several variations of Stiff Person Syndrome, which range from affecting only one specific location of the body to affecting a widespread area of the body.

    Each subtype has its own name.

  9. #48
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    Fact #38

    Other disorders that can cause symptoms similar to Stiff Person Syndrome include hyperekplexia, multiple sclerosis, transverse myelitis, occult vascular malformations, neuromyotonia (Isaac’s syndrome), Schwartz-Jampel syndrome, muscular dystrophies, and metabolic myopathies.

    These other Syndrome, though, also include signs not consistent with SPS, such as status of GAD65 level, presence of brain lesions, optic neuritis, to name a few.

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    Fact #39

    Cannibis is comprised of several therapeutic elements: THC, CBD and Terpenes.

    THC, which creates the high, is a bronchodilator, a neuroprotectivr antioxidant, has 20 Times the anti inflammatory property of aspirin, a pain reliever and an anti spasmodic muscle relaxant.

    CBD modulates the THC side effects of anxiety, tachycardia, hunger and sedation. CBD is an analgesic, neuroprotectivr antioxidant, anti nausea. Can kill breast cancer cells and a powerful anti MRSA agent. It decreases stroke risk.
    Also, when opioids don’t control cancer pain, CBD sees a 30% decrease in cancer pain.

    CBG, a type of CBD, IS A GABA UPTAKE INHIBITOR thereby performing nicely as a muscle relaxant. This is important for SPS and also MS patients with spasms.

    Terpenes are in MMJ and divided into sunsets of Monoterpenes and Sequiterpenes. There are several types in these subsets. Those monoterpenes reviewed includeLimonene, Myrcene, Pinene, and Linalool.
    Sequiterpenoids include Caroyophyllene, Neridol, Carophylline Oxide and Phytol.

    More on the research knowledge of CBD, THC and Terpenes, when am able to type it.

    Remember: it is the synergy between these components of Cannibis that create the therapeutic effect.
    Last edited by Sunshine; 03-27-2018 at 06:53 AM.

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    Fact#40

    Wikipedia:
    “There is no evidence-based criteria for treating SPS, and there have been no large controlled trials of treatments for the condition. The rarity of the disease complicates efforts to establish guidelines.”

    Clinical anecdotes and success of treatment strategies for other neurological diseases are applied to SPS.

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