Old 09-01-2009, 11:01 AM #1
miss91 miss91 is offline
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Question Where To Go Now?

Hi everyone. I'm posting again because since my July 27 Mayo visit, I have gotten worse. Mayo saw me just 2 months into symptoms. I had blood tests, and an EMG on just one side of my body (the "worse" side). I was told no ALS, no MND, etc. However, I did not get answers for my issues.
Since that time, my foot atrophy has traveled up my leg into the calf and side of the knee. It is measurable, and I feel unbalanced when walking. Fascics continue. My toes are ridiculously far apart, and my shoe is much too large. I can still walk and make myself do so about a mile a day. I also make myself bike ride a couple of miles a day.
I'm still without cramps, haven't fallen, have displayed no UM signs. I'm concerned about my atrophy and fasics, which keep progressing.
My question is: what should I do at this point? I did contact Mayo and told my Dr. (about a month ago) that I was progressing. He said to come back 2 -3 months after my appt. in July to see any progression. I set up an appt. for Sept. 30, but I feel like I've progressed enough since July that maybe I should get in now (receptionist said I could get in earlier if I wanted to).
Also, before I went to Mayo, I set up another appt. with a local neuro for a 2nd opinion. That appt. is on Thursday, but I feel like that might be wasting time/money to go to a local when I have been and will continue to be seen by Mayo....but maybe I should go anyway, just for another opinion.
Basically, I have gone from being just fine in May to having serious problems and obvious atrophy in less than four months. I just hope to get some advice from everyone. You can brush off symptoms for only so long.
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Old 09-01-2009, 12:59 PM #2
tmasters tmasters is offline
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Default

Missy,

I think you should keep the local neuro appointment but don't mention ALS during the visit. Leave him open to figure it out on his own. He may decide to go in a different direction and maybe you'll get some results with a different diagnosed. Seems like there's something going on, but without weakness probably not ALS.

Take care,
-Tom
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2nd opinion, advice, als, atrophy, atrophy;mayo;emg, back, cramps, emg, foot, hope, mnd, money, problems, progression, symptoms, tests, wanted


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