Lynk
Active member
- Joined
- May 20, 2015
- Messages
- 31
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- FL
- City
- Tallahassee
Hello, I have been on my journey to try to figure out what is wrong with my rt fingers, hand and arm, beginning in Oct. 2014. It started with a general feeling of weakness in my grip, but nothing too alarming. Then I found myself unable to pinch a clothespin at all with my thumb and forefinger. That was alarming so I went to my Primary dr. who sent me to my first neuro guy. Shortly thereafter I was able to pinch the clothespin just a little bit and it has remained that way since November. I was really freaked out at the start as I was sure it was ALS.
But over the last 6 months 3 local neurologists have all said they thought that ALS was unlikely after 2 EMG/NCV tests that were unremarkable, so I started to relax. My brain MRI and cervical spine MRI were normal, and no improvements have been gained through PT. or chiropractic. One guy in February thought maybe I had a small stroke, but the MRI said no. He determined that I had significant rt. arm weakness not just in my hand. I was happy to think it was a stroke, but my main neuro doctor wasn't buying it. the idea of thoracic outlet syndrome was floated...but in the end, when nothing has improved, he sent me to the chair of neuromuscular at Shands Hospital in Jacksonville....appt was May 12, 2015.
Dr. Berger spent 2.5 hours with me. He did a vast array of strength tests and a third EMG/NCV test that also included my left arm, rt. leg and back. He was much more methodical, thorough and scientific than the other guys. He assigned numerical values to my strength tests. In the end he said he saw active nerve abnormalities, and my weakness with no pain or sensory deficit led him to the opinion that I have ALS. He was very grave and serious, but quite compassionate. However, he will not make an official diagnosis until I come back in 4-6 months to see if it has spread, stayed the same or improved. I wish I didn't trust his expertise, but he really seemed like he knew what he was doing.He recommended that I start taking riluzole now, and I'm researching whether I want to do that.
So here I am in limbo hell. I have to live as if I both do and don't have ALS. Everything has changed and nothing has changed. I just feel so sad and tired. I want to bury my head in the sand and pretend this isn't happening. I know there are things i should do while I am still so functional. I have a good job and a wonderful family..great husband, 2 daughters who live nearby, 61 years old. Another of our challenges is that my 90 yr old mother had a stroke 3 years ago and lives with us. She requires 24/7 care and I'm a big part of it.
Thanks for listening.
Lyn
But over the last 6 months 3 local neurologists have all said they thought that ALS was unlikely after 2 EMG/NCV tests that were unremarkable, so I started to relax. My brain MRI and cervical spine MRI were normal, and no improvements have been gained through PT. or chiropractic. One guy in February thought maybe I had a small stroke, but the MRI said no. He determined that I had significant rt. arm weakness not just in my hand. I was happy to think it was a stroke, but my main neuro doctor wasn't buying it. the idea of thoracic outlet syndrome was floated...but in the end, when nothing has improved, he sent me to the chair of neuromuscular at Shands Hospital in Jacksonville....appt was May 12, 2015.
Dr. Berger spent 2.5 hours with me. He did a vast array of strength tests and a third EMG/NCV test that also included my left arm, rt. leg and back. He was much more methodical, thorough and scientific than the other guys. He assigned numerical values to my strength tests. In the end he said he saw active nerve abnormalities, and my weakness with no pain or sensory deficit led him to the opinion that I have ALS. He was very grave and serious, but quite compassionate. However, he will not make an official diagnosis until I come back in 4-6 months to see if it has spread, stayed the same or improved. I wish I didn't trust his expertise, but he really seemed like he knew what he was doing.He recommended that I start taking riluzole now, and I'm researching whether I want to do that.
So here I am in limbo hell. I have to live as if I both do and don't have ALS. Everything has changed and nothing has changed. I just feel so sad and tired. I want to bury my head in the sand and pretend this isn't happening. I know there are things i should do while I am still so functional. I have a good job and a wonderful family..great husband, 2 daughters who live nearby, 61 years old. Another of our challenges is that my 90 yr old mother had a stroke 3 years ago and lives with us. She requires 24/7 care and I'm a big part of it.
Thanks for listening.
Lyn