Downhillwego
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  • Just wondering if you’ve been able to get in with a neurologist yet? I was diagnosed with Primary Lateral Sclerosis (rare form of ALS) and my first noticeable symptom was restless legs.
    I have the exact same problem as you with RLS and am taking 300-600 mg of Gabapentin at night for RLS specifically and then 7.5mg of Mirtazapine for sleep. It works pretty well. Sorry to hear you’ve been going through diagnostic purgatory for so long. I’m 21 months in and still no diagnosis yet. Have you had an EMG at all yet?
    Downhillwego
    Downhillwego
    My Neurologist mentioned 'cramp Fasciculation syndrome' as a possibility for me, although on the request for a EMG she did also mention ALS, maybe she did that as a favour so that I get seen sooner, or maybe she is genuinely concerned about it, I just don't know.
    Downhillwego
    Downhillwego
    Last year she noted muscle wasting of right shoulder and weakness in right knee, the Brain MRI was marked abnormal for white matter hyperintensities but after a few more MRI scans of Spine ect they were deemed incidental findings.
    Downhillwego
    Downhillwego
    And I think she was all ready to discharge me until I rolled up my trouser legs and she saw the obvious difference in size. Now I'm waiting for the Rona to move on and normality and a huge backlog to clear before I actually get any idea what the future holds.
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