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Albert1976

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PALS
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Hello everyone. I have been recently been diagnosed with ALS through a second opinion. Obviously things are very confusing right now and have yet to set in. I am still extremely hopeful that this is a misdiagnosis and will be seeking a third opinion. A little history about my journey to this point.

In early 2012, after leaving the gym, I noticed my left thumb and index finger twitching. I chalked it off as my arm/hand muscles overworked from exercise . As the days and months progressed, my left arm grew weak. Towards the end of September 2012, I couldn't lift my arm past chest level or carry any weight. I paid a visit to my PCP and he reffered me to a Neurosurgeon. After an MRI if my cervical area and EMG test, it was determined that I had a bulging disc in C5/C6. Funny thing, there was never any pain that usually accompanies a bulging disc. I had a C5/C6 discectomy in early 2013. Months later, I had full use of my left arm again and was elated...even though I had a occasional twitching of my left thumb.

Fast forward to December 2016. Again while in the gym, I noticed my left arm getting weak and unable to keep up with my right arm while lifting weights. I stopped my workout and decided to take a break from my exercise routine for a few days. Several gym sessions later, my left arm was progressively getting weaker..to the point where I couldn't lift more than a couple of pounds. Then the twitching started.

By the end of January 2017, I visited my PCP. I was referred to a Neurosurgeon and Neurologist for futher examination. MRIs were taken of my cervical area, left shoulder, brain, and chest. An EMG and NCT were administered. MRIs revealed no physical abnormalities other than a slight tendonitis in my left shoulder. EMG and NCT revealed severe nerve damage in my upper left arm and some nerve damage in my right arm...which seemed healthy to me at the time. Soon after those tests, my right hand lost grip strength and dexterity. My Neurologist and Neurosurgeon consulted with each other and came to a conclusion that it was the onset of ALS. They suggested I get a second opinion and even referred me to a Neurologist in Houston that specializes in nueromuscular disorders.

My Houston Neurologist was finally able to see me this May. He ordered a lumbar puncture, blood tests, and an MRI of my brachial plexus area because he wasn't convinced I had ALS. He stated I didn't have the atrophy or hyper-reflexes of a person with ALS. He suspected MMN with conduction block. After the tests were complete and my follow up appointment this June, the Neurologist in Houston stated that all tests were negative for MMN or any pinched nerve in my brachial plexus area. He also came to the conclusion that it was the onset of ALS. I was devestated to say the least.

The only thing that still puzzles me and makes it difficult to accept an ALS diagnosis is that my left arm tends to get progressively strong for weeks at a time before going numb from my deltoid and weak again. I now get cramps in both hand while trying to preform a task. Any comments or advice would be appreciated...I need a direction to go in.
 
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lgelb

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If I may ask, whom did you see in Houston?

When the L arm rebounds, how strong does it get?

Are you saying you have no atrophy at all?

Best,
Laurie
 

Albert1976

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Joined
Jun 8, 2017
Messages
2
Reason
PALS
Diagnosis
6/2017
Country
US
State
TX
City
Corpus Christi
When the left arm rebounds, it probably gets up to maybe 1/4 of the strength of my right arm....which is still still strong. My left bicep is smaller than my right bicep, but it has been so even even before all this started. I figured it shrunk from the lack of use. Is there any way to send you the Neurologist's name in a private message?
 

lgelb

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Not as yet (it's a tenure thing), but I'll PM you with my email.
 
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