Judy08
New member
- Joined
- Apr 4, 2016
- Messages
- 5
- Reason
- PALS
- Country
- US
- State
- Rhode Island
- City
- Providence
Hi, I am new to this forum. I was told last Wednesday that I have ALS but believe I have been misdiagnosed. My story.
I began having spasms in my right hand of the ring finger and pinky finger in August 2014. At that time I did notice difficulty in walking but attributed it to the fact I had broken my left ankle in March 2014. I continued to speed walk and run as well as strength training up until May 2015. My symptoms mostly consist of hand weakness in my right hand, facilitation in my hand as well as muscle atrophy. I also occasionally will have facilitation in the upper portion of my right arm. I am not able to do a single calf raise with my right leg. So the muscle weakness is isolated in my right hand and right calf only. My neurologist sent me for blood work to see if I had elevated GM1 antibodies. I do. At this point she referred me to a Neuromuscular specialist. This is who I saw last Wednesday. The elevated antibodies point to MMN (Multifocal Motor Neuropathy) but this doctor is saying the blood work means nothing and discarding it. He did a rapid fire strength test on me and concluded that I was also showing minimal strength lose on my left side as well. Next an EMG was done and it didn't show any conduction block and so based on that he diagnosed me with ALS. A very slow progressing form. He called in a prescription for me to begin taking and is in the process of referring me to an ALS specialist.
I do not have any other ALS symptoms other than the hand and calf weakness and the weakness has not progressed. From my research less than 1% of ALS patients test positive for this GM1 antibody. More than 40% have an increased Creatine level, which I do not. Also, 40% of people who have been diagnosed with MMN do not show conduction blockage on an EMG.
Also, again I am just stating what I have read online but from what I understand ALS have over reactive reflexes or hyper reflexive. I am the opposite, hypo reflexive which is characteristic of MMN.
Question - Am I in denial or is it possible I have been misdiagnosed by this doctor?
I began having spasms in my right hand of the ring finger and pinky finger in August 2014. At that time I did notice difficulty in walking but attributed it to the fact I had broken my left ankle in March 2014. I continued to speed walk and run as well as strength training up until May 2015. My symptoms mostly consist of hand weakness in my right hand, facilitation in my hand as well as muscle atrophy. I also occasionally will have facilitation in the upper portion of my right arm. I am not able to do a single calf raise with my right leg. So the muscle weakness is isolated in my right hand and right calf only. My neurologist sent me for blood work to see if I had elevated GM1 antibodies. I do. At this point she referred me to a Neuromuscular specialist. This is who I saw last Wednesday. The elevated antibodies point to MMN (Multifocal Motor Neuropathy) but this doctor is saying the blood work means nothing and discarding it. He did a rapid fire strength test on me and concluded that I was also showing minimal strength lose on my left side as well. Next an EMG was done and it didn't show any conduction block and so based on that he diagnosed me with ALS. A very slow progressing form. He called in a prescription for me to begin taking and is in the process of referring me to an ALS specialist.
I do not have any other ALS symptoms other than the hand and calf weakness and the weakness has not progressed. From my research less than 1% of ALS patients test positive for this GM1 antibody. More than 40% have an increased Creatine level, which I do not. Also, 40% of people who have been diagnosed with MMN do not show conduction blockage on an EMG.
Also, again I am just stating what I have read online but from what I understand ALS have over reactive reflexes or hyper reflexive. I am the opposite, hypo reflexive which is characteristic of MMN.
Question - Am I in denial or is it possible I have been misdiagnosed by this doctor?
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