lmk79
New member
- Joined
- Aug 28, 2017
- Messages
- 8
- Reason
- Learn about ALS
- Country
- Uni
- State
- TX
- City
- El Paso
I have a closed thread about atrophy in my gastrocnemius.
Here is my story until now.
May of 2017, tore gastroc. At PT they thought it seemed neurologic and their hypothesis was that the tear was secondary to existing atrophy that I had not noticed. My toe taps on the affected leg were very slow and hard to do. Ortho said there was nothing they could do. Neuro did EMG that was mostly normal, just showing damage in the single muscle, brain and spine MRI were good as was blood work. I carried on that I was just weird and wasn't healing.
Carry on to this summer. I can't go up stairs at all. My handwriting is barely legible and it is very hard to write at all. Typing is ok though. The right leg cant raise straight up even in a chair. I can go to the side but not up. PCM sent me back to neuro after an MRI on my leg showing more atrophy and that it continued up my leg to the thigh.
Neuro sends me for a muscle biopsy. It comes back definitive for nerve disease/damage but was not done in the atrophied muscle but a muscle that externally looked to be unaffected. The report reads "definite if mild changes of denervation induced muscle disease, with some small angulated atrophic fibers, a few hypertrophic fibers, and definite small groups of myofibers of the same type... Such myofiber type grouping is the hallmark of early denervation/reinnervation...The presence of some scattered small myofibers indicates that this is an active process."
Now neuro is different. Does a more thorough physical exam that before the biopsy was ordered. She tells me I had hyperreflexia last year but she dismissed it as some people just are like that but there is more muscle wasting now and the reflexes are more brisk now. She also tells me I am weaker on exam than last year. Orders 16 more blood tests, all are back and good. Brain and spine MRI are the 6th with EMG on the 8th. After that she wants a spinal tap and then to Mayo.
I had extreme shortness of breath after being intubated from the biopsy. After 2 weeks of it not improving I was sent for a lung function test Friday. I was only told it looks to be restricted not obstructed like with my asthma. It feels like my lungs are unable to inflate all of the way, like they hit a wall around them.
My questions are, can the biopsy show MND and does their use of disease mean that it is. Second, is the spinal tap crucial?
Here is my story until now.
May of 2017, tore gastroc. At PT they thought it seemed neurologic and their hypothesis was that the tear was secondary to existing atrophy that I had not noticed. My toe taps on the affected leg were very slow and hard to do. Ortho said there was nothing they could do. Neuro did EMG that was mostly normal, just showing damage in the single muscle, brain and spine MRI were good as was blood work. I carried on that I was just weird and wasn't healing.
Carry on to this summer. I can't go up stairs at all. My handwriting is barely legible and it is very hard to write at all. Typing is ok though. The right leg cant raise straight up even in a chair. I can go to the side but not up. PCM sent me back to neuro after an MRI on my leg showing more atrophy and that it continued up my leg to the thigh.
Neuro sends me for a muscle biopsy. It comes back definitive for nerve disease/damage but was not done in the atrophied muscle but a muscle that externally looked to be unaffected. The report reads "definite if mild changes of denervation induced muscle disease, with some small angulated atrophic fibers, a few hypertrophic fibers, and definite small groups of myofibers of the same type... Such myofiber type grouping is the hallmark of early denervation/reinnervation...The presence of some scattered small myofibers indicates that this is an active process."
Now neuro is different. Does a more thorough physical exam that before the biopsy was ordered. She tells me I had hyperreflexia last year but she dismissed it as some people just are like that but there is more muscle wasting now and the reflexes are more brisk now. She also tells me I am weaker on exam than last year. Orders 16 more blood tests, all are back and good. Brain and spine MRI are the 6th with EMG on the 8th. After that she wants a spinal tap and then to Mayo.
I had extreme shortness of breath after being intubated from the biopsy. After 2 weeks of it not improving I was sent for a lung function test Friday. I was only told it looks to be restricted not obstructed like with my asthma. It feels like my lungs are unable to inflate all of the way, like they hit a wall around them.
My questions are, can the biopsy show MND and does their use of disease mean that it is. Second, is the spinal tap crucial?