Sidney
Active member
- Joined
- Jan 9, 2016
- Messages
- 98
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LO
- City
- London
Hi. Firstly thanks to those who gave advice to me 9 months ago at the start of diagnosis. Igelb, Atsugi and Tillie particularly your compassion and knowledge helped no end. I was initially diagnosed with BFS but after 3 clean Emg's I have had a setback with a fourth. Denevrvation was found in the peroneal and abd hallucis nerves. I have pes cavus high arches now and foot atrophy .
The new diagnosis is ' distal sensory motor autonomic axonal poly neuropathy '.
I fasiculate constantly and am waking frequently at night with nightmares and breathlessness.
I still feel this could turn out to be Als and am terrified. I'm 57 with beautiful Grandkids and just can't deal with this mentally.
I wondered if any of you have experience with this diagnosis becoming ALS?
And once gain thank you for your selflessness in putting your grief and pain aside to run this site.
Cheers Sidney
The new diagnosis is ' distal sensory motor autonomic axonal poly neuropathy '.
I fasiculate constantly and am waking frequently at night with nightmares and breathlessness.
I still feel this could turn out to be Als and am terrified. I'm 57 with beautiful Grandkids and just can't deal with this mentally.
I wondered if any of you have experience with this diagnosis becoming ALS?
And once gain thank you for your selflessness in putting your grief and pain aside to run this site.
Cheers Sidney