Old 07-24-2009, 11:53 AM #16 (permalink)
laurel
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laurel
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Hi Brady,
If you can afford the Mayo Clinic it seems like a good idea to keep that appt. as they do have the reputation of having the top notch specialists all under one roof. It probably would take a long wait to get in to see a local neurologist who specialized in neuromuscular disorders. I don't mean that you can't talk about sensations, but how you describe things is important. i.e. I have numbness in my big toe that comes and goes, my forearms on the upper surface are sore in the muscle (versus just on the skin surface), I can look at my calf muscles and see intermittent twitches and when I flex the muscle the twitching increases and they appeared to be rolling, my arms and hands are weak but the strength is normal, but I feel awkward or clumsy when picking up a fork. Remember to note that the rheumatologist said you had slight muscle inflammation. And take any records you have with you. I still think it sounds like BFS twitching from what I have read. You really aren't describing muscle atrophy which results in weakness from dying muscles like in ALS. You are describing the fatigue feeling that people with BFS describe when they say they feel weak. But I am no doctor so it is best to carry on with your appointment. No one but a doctor can diagnose you, and provide the reassurance that you need.
Laurel
 
Old 09-04-2009, 08:40 AM #17 (permalink)
K-Town
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Default Re: My symptoms

Brady? What's your situation now? My husband has quite a fee of the same symptoms that do not match ALS however he's been diagnosed with it. He has tingling, buzzing in his biddy. Tingling in face, rash on face n neck, burning, head feels full. Not saying he doesn't have ALS, as it quacks like a duck, however, there are sensory symptoms that don't add up. I was thinking he has two things going on.. Anyone else?
 
Old 09-04-2009, 08:55 AM #18 (permalink)
MossRose
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Default Re: My symptoms

Sorry I should have posted my question under my symptoms not my husband's symptoms. My question is has anyone used the University of Minnesota to be diagnosed? I would like to go to Mayo but cannot afford it and my insurance will not pay for it.
 
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