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  • Hi Jpier,

    I hope you are doing better. How are you?!?!? Did you ever get a diagnosis? I have been reading your posts about going to Dr. Vu and possibly Joseph and Mayo. I am also in Orlando and dealing with the same issues. Curious. Has anyone been able to help you (I have an appointment scheduled with Vu in March)? Also, have you had any markers show up on autoimmune labs? I recently tested positive for GANGLIOSIDE ASIALO GM 1 ANTIBODY (IGG), EIA and am also diagnosed with Chronic Lyme Disease. Don't know if that helps any. Would love to hear more about your experience.
    Going to call Dr Joseph tomorrow and try to get an appointment because my appointment at mayo is on Sept.
    Well Ill tell you this...that's the same thing Dr Vu has been saying to me for the past 7 months, And all tests seem fine even EMG's .I started having symptoms for a year now.
    BUT... I'm very frustrated,comfused and lost here.
    I have a lot of the classic ALS symptoms,swallowing,tone of voice,breathing,twithching, cramps,weakness,fatigue.
    Chronic Insomnia, Pain ,lots of headaches and sexual disfunction ...those are weird symptoms but I have them since day 1
    I'm very comfused ,sorry for all the questions.
    Thanks for all you're help
    Haven't you yet seen Dr Joseph? Dr August Joseph diagnosed my wife. Get his opinion. Near the corner of Edgewater and Lee Road. 5200 Davisson Ave Orlando, FL 32810 Phone (407) 290-1558.

    Then, the Mayo in Jacksonville is an excellent clinic for confirming a diagnosis and answering questions about the disease's progression. They are the experts, for sure. Dr Boylan handled our case expertly.

    Frankly, although I am not a doctor, your pain and tremors do not in any way say "ALS" to me. Your symptoms sound like neuropathy. Totally different disease. ALS is all about paralysis and death. It is not painful. The very few fasciculations that might precede a part of the body paralyzing are not intense.

    Neuropathy can be caused by Guillain-Barré syndrome.
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