ALS looming but no diagnosis yet

[haileyone]

I'm a 45 year old female. In April 2006 I started having weakness in my right forearm. Within a few weeks, weakness spread to my left forearm. By August, 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. Most recenlty my mouth has been weak 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.

However, 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. The doctor at Hopkins is the head of neurology there and very good. He will perform a muscle biopsy in two weeks.

My first abnormal EMG 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 and I think I was too scared to ask.

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 feel I am getting closer to an ALS diagnosis as docs aren't ready to rule it out yet.

Any pertinent comments would be appreciated.

[Manhattan]

Sorry, no pertinent comments but I just want to wish you all the luck. I went through a scare myself about ALS several years back with all over twitching and "perceived" weakness on my part - probably paralyzed by fear. Keep in mind how far medicine has come in the past few years even as far as cure rates for certain diseases. It could happen with ALS too, especially with all of the research. I wonder if there is any work being done with stem cells? Please keep us posted on your diagnosis.

[haileyone]

Thank you for your kind words.
I thought my weakness was all in my head, but I have been assured by two neurologists that is indeed real. I didn't mention that I also have some muscle atrophy in both arms.