TonyEmber
New member
- Joined
- Mar 27, 2018
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 10/2017
- Country
- IR
- State
- IR
- City
- Oranmore
Hi everyone,
I'm very grateful to reach out to the resources on this forum. I've read through the most read posts and have good cause for concern.
I'm not sure what information to give you, I believe the most important is the EMG results. My first EMG in October showed extensive motor neuron damage in 3/10 areas. I've been told by the neurologist that it indicates upper and lower motor neurons. The second EMG was in February, last week I met a different neurologist, she told me the motor neuron damage had spread. That's all I could find out from her. They have said it's not ALS because I am recovering some mobility after losing it.
I have been checked for all other causes of motor neuron damage including IVIG treatment, MRIs, CAT scans, blood tests. They they have all been clear. As for fasciculations muscle loss overall body weakness, I spend every day fighting to stretch my fingers out straight to practice heel toe walking which I can only do as long as my legs are strong enough to hold me up. The attitude of the consultant's is that I'm too healthy to have that much motor neuron damage, so I can't be diagnosed with ALS.
My health is degenerating, despite everything I do, I don't even drink coffee any more. Neurological symptoms I've had over the last few years have led to the discovery of motor neuron damage which is getting worse and yet I remain undiagnosed. The ambiguity is an obstacle in the receiving proper support and informing healthcare professionals about how to respond to my degenerating condition.
I welcome your questions, I have my medical files until the end of last year and happy to share whatever information you think would be useful.
thanks
Ember
I'm very grateful to reach out to the resources on this forum. I've read through the most read posts and have good cause for concern.
I'm not sure what information to give you, I believe the most important is the EMG results. My first EMG in October showed extensive motor neuron damage in 3/10 areas. I've been told by the neurologist that it indicates upper and lower motor neurons. The second EMG was in February, last week I met a different neurologist, she told me the motor neuron damage had spread. That's all I could find out from her. They have said it's not ALS because I am recovering some mobility after losing it.
I have been checked for all other causes of motor neuron damage including IVIG treatment, MRIs, CAT scans, blood tests. They they have all been clear. As for fasciculations muscle loss overall body weakness, I spend every day fighting to stretch my fingers out straight to practice heel toe walking which I can only do as long as my legs are strong enough to hold me up. The attitude of the consultant's is that I'm too healthy to have that much motor neuron damage, so I can't be diagnosed with ALS.
My health is degenerating, despite everything I do, I don't even drink coffee any more. Neurological symptoms I've had over the last few years have led to the discovery of motor neuron damage which is getting worse and yet I remain undiagnosed. The ambiguity is an obstacle in the receiving proper support and informing healthcare professionals about how to respond to my degenerating condition.
I welcome your questions, I have my medical files until the end of last year and happy to share whatever information you think would be useful.
thanks
Ember