Jayjmarc
Member
- Joined
- Aug 9, 2012
- Messages
- 17
- Reason
- Learn about ALS
- Country
- US
- State
- Pa
- City
- Irwin
I am a 41 year old Male. I have been battling something now for the last two years with the last six months getting worse. I have had every test done known to man. All tests except for EMGs come back negative. I have had three EMGs and maybe a fourth one next week by an ALS specialist in Pittsburgh. The second EMG showed issues in my arms and legs. The Doc at the time wrote a note on the EMG stating, if continued neurological symptoms persist then it is possible ALS/MND. I was seeing two Neuros who thought it was Parkinson's. I was taking amantadine, occasional sinemt and azilect until I was one of the first to have the newly FDA approved DAT scan done of my head to show it was not Parkinson's. Within the last six months I have been showing atrophy on my right side. I have also started experiencing the popping facs in my calfs but also through out my entire body, even in my feet. The strange thing is I am also cramping and experiencing extreme muscle stiffness with pain which I am not sure is a symptom of ALS.
I thought this was Lyme Des. but have had two blood test (with Quest) to show otherwise. I have been an avid Moutain Biker (20 years), lived in the Moutains for a few years and thought for sure this was the case. I have been told to send some blood to Igenex labs, who from what I understand, specialize in Lyme tests. Should I do this or am I wasting time. I will wait until I see the new Doctor next week who was referred to me by the Neuro thinking I had Parkinson's.
I am a mess and am even having a hard time typing this. I was in the hospital for several days last week due to not being able to breath. While I was there they took a chunk out of my thigh for a muscle biopsy. A resident did my third EMG and said my leg got worse from the last emg a year ago.
Any suggestions on how to approach the ALS specialist next week? Are there that many Lyme cases misdiagnosed as ALS as some of these sites state? I know you should not believe what you read on the internet. Thank you.
I thought this was Lyme Des. but have had two blood test (with Quest) to show otherwise. I have been an avid Moutain Biker (20 years), lived in the Moutains for a few years and thought for sure this was the case. I have been told to send some blood to Igenex labs, who from what I understand, specialize in Lyme tests. Should I do this or am I wasting time. I will wait until I see the new Doctor next week who was referred to me by the Neuro thinking I had Parkinson's.
I am a mess and am even having a hard time typing this. I was in the hospital for several days last week due to not being able to breath. While I was there they took a chunk out of my thigh for a muscle biopsy. A resident did my third EMG and said my leg got worse from the last emg a year ago.
Any suggestions on how to approach the ALS specialist next week? Are there that many Lyme cases misdiagnosed as ALS as some of these sites state? I know you should not believe what you read on the internet. Thank you.