keane
Active member
- Joined
- Jan 6, 2009
- Messages
- 30
- Reason
- Learn about ALS
- Country
- US
- State
- IL
- City
- Washington
I've only posted a few times, but thought some might find my story interesting. Currently, I'm 43 and experiencing extreme weakness of my left arm. I have minor weakness on other extremeties, with severe cramps and minor twitching of the larger muscles. Years ago, I began noticing wekaness in the legs and ultimately went to a university medical hospital in Georgia, where a biopsy was performed. The physician had a rough bedside manner and basically told us everything was okay. I learned to adapt to the problem and it did not get worse. I also began having severe problems with ankyosing spondylitis and multiple fusion activity in my back and ribs.
On my last visit with the current problem, the specialist here in another part of the US said he reviewed the previous biopsy conclusion, plus thousands of dollars worth of tests that ruled out MS, other diseases, and compressed nerves, so he suspected PLS. On a later visit he informed me that he had studied the entire biopsy report and found that the previous facility did not mention that they found muscle cell lipid droplets common to a rare muscle disease. He felt that the earlier doctor did not consider the finding because all of my limbs were not impacted equally, plus there was no evidence my heart was weak (this myopathy affects the cardiac muscles).
In a nutshell, the current doctor states that the left arm-dominant symptoms are not consistant with that myopathy. Reflexes are exaggerated like PLS, but only on one leg and the other arm, which is atypical. He wants me to attend the MAYO clinic or others, undergo cardiac testing, and refrain from aerobic activities. Since I previously lifted weights and have very strong muscles, he wants me to attend physical therapy weekly to clinically document muscle size and perform rannge of motion exercise in a supervised setting. He thinks it may take a year or more to diagnose.
Thanks again for the support on this site. By the way, I've found that many large corporations, like the one I work for, will match employee donations to foundations such as those for ALS research - the employee just has to ask.
On my last visit with the current problem, the specialist here in another part of the US said he reviewed the previous biopsy conclusion, plus thousands of dollars worth of tests that ruled out MS, other diseases, and compressed nerves, so he suspected PLS. On a later visit he informed me that he had studied the entire biopsy report and found that the previous facility did not mention that they found muscle cell lipid droplets common to a rare muscle disease. He felt that the earlier doctor did not consider the finding because all of my limbs were not impacted equally, plus there was no evidence my heart was weak (this myopathy affects the cardiac muscles).
In a nutshell, the current doctor states that the left arm-dominant symptoms are not consistant with that myopathy. Reflexes are exaggerated like PLS, but only on one leg and the other arm, which is atypical. He wants me to attend the MAYO clinic or others, undergo cardiac testing, and refrain from aerobic activities. Since I previously lifted weights and have very strong muscles, he wants me to attend physical therapy weekly to clinically document muscle size and perform rannge of motion exercise in a supervised setting. He thinks it may take a year or more to diagnose.
Thanks again for the support on this site. By the way, I've found that many large corporations, like the one I work for, will match employee donations to foundations such as those for ALS research - the employee just has to ask.