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Neurological Disorder - Need Help!

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ringo77964
ringo77964

My sister (64) has been suffering from a rare neurological disorder which caused limbs numbness, muscle tight, spasm and unable to walk, she has been admitted to hospital since August 02, 2015, the panel of doctors did all kind of blood test, MRI, Pet Scan and concluded her symptom was neither caused by stroke nor cancer, as the doctor was unable to diagnose the disease, no medical treatment was given except physiotherapy and occupational therapy, later she was given globulin injections and starting October  the doctor sent her for blood dialysis, so far she did 4 and will complete the first round of blood dialysis by end of this week. 

Obviously she is frustrated, depressed, helpless and wanted to give up, we are replying on the doctor's expertise and experience but as 11 weeks have gone by, I feel I should reach out to see if anyone can help to provide precedent case and treatment, or direct me tod the right person for inquiries, any advice will be much appreciated, 

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  • ringo77964
    ringo77964

    Posted

    We had a discussion with the doctor today about my sister's situation.

    Bases on the symptoms, blood tests, MRI and other test results they concluded it is very closed to Stiff Person Sdyrome (SPS), which is a very rare case among various Immue diseases. According to the doctor The ttreatments would be either globulin injection, blood dialysis or use of steroids, since globulin injection and blood dialysis did not work on my sister's the doctor suggested to use steroid to treat the disease, it will be a high dose steroid in other words the side effect will be more impactful. 

    Does anyone heard about SPS before, any precedent case that we can reference to? 

    I also mentioned about Sarah's case but the doctor ruled out any spinal problem......

     

    • ptolemy
      ptolemy ringo77964

      Posted

      There have been a couple of articles in the Daily Mail about people with SPS. I wonder why they want to use steroids, what did they mean by high dose? I would have thought large doses of a benzodiazapine would be used. Also immunoglobulin, which you mention and something like gabapentin. Have they done an EMG test? Also is your sister diabetic? 
    • lynne69494
      lynne69494 ringo77964

      Posted

       lve not heard of it and it doesnt even come up on seach with this site, though search does go to other immune conditions on site, so exceptionally rare or newly discovered condition, check out as many site as you can to find info, or if it was in Daily Mail see if you can find it in their library.  Although l can be cynical about drs, l dont think theyd suggest high dose steroids unless they though essential, they dont hand out steroids at any doseage easily, even more so high doseage, but it might be short term to improve her present state and then weaned onto lower dose, But its good to get as much info as you can before seeing docs and her starting on them, and knowing what side affects to expect. Best wishes to your sis 
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