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anitalady

New member
Joined
Jan 23, 2007
Messages
1
Reason
Learn about ALS
Country
US
State
MD
I'm a 45 year old female. I started having problems in April. It started with a heavy and weak feeling in my right forearm. Within a few weeks, the feeling spread to my left forearm. Eventually, both upper arms felt that way as well. During this time I also have had intermittent muscle twitches and feelings of vibrations, mostly in my legs. During the summer my teeth and lips started to feel heavy as well.

I tested negative for Lyme twice, but was treated anyway without success.
I have had all the relevant MRIs, all normal, and a spinal tap which was also normal.
I have nested negatively for all blood tests.
Nerve conductions studies were normal.

I have had 2 abnormal EMGs, the latest at Johns Hopkins. Initially the doctor there thought I had Mysthenia Gravis, but I tested negative for that with the single fiber EMG. Still, he has put me on Mestinon while we await yet more blood tests, this time genetic testing. He will perform a muscle biopsy later this month.

I have tested normally for everything except the abnormal EMG tests. The first abnormal test was in July at the University of MD hospital, and it showed chronic, systemic nerve damage but he had no diagnosis.
The Hopkins doc did not elaborate on what kind of muscle or nerve damage he found.

My arms are so tired and weak all the time. If I had this same feeling of weakness in my legs I would surely be in a wheelchair.
I would like to rule out ALS from my own mind, but since I keep testing negatively to everything else it is difficult to do.
Has anyone already diagnosed with ALS had a similar experience?
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
Anita -

Welcome to the forum. I'm very sorry to hear you're having so much trouble. Whether you have ALS or not may be too soon to say. Many people hear have endured lengthy diagnostic procedures over the course of months, sometimes years, before getting a definitive diagnosis. Some end up diagnosed with something other than ALS.

Most of us can relate to the anxiety that you are experiencing now. It is very stressful wondering and waiting for such a diagnosis and all that it means. Please know that you are not alone. The folks here on this forum are a wonderful bunch and will share their knowledge and experience with you.

If you haven't already done so, you may want to browse old threads. There's tons of info and maybe you'll find postings that address some of your current concerns.

Nice to meet you.

Liz
 
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