Karin Bolette
Active member
- Joined
- Mar 14, 2010
- Messages
- 44
- Reason
- PALS
- Diagnosis
- 03/2010
- Country
- CA
- State
- Ontario
- City
- Toronto
:sad::idea:Hello everyone- first I want to thank all who have supported me for the past 6 months.
On June3 I had an EMG on my left leg and arm at the ALS Clinic at Sunnybrook Hospital in Toronto. I was surprised that they did my arms and legs since my symptoms are Bulbar. Anyways I was told that it was not ALS but presents as such.
In 2002 I was in a house fire and suffered 3 &4 degree burns to my body and neck, the worse effected being my neck. For the past year I've had a lump on the back of my neck getting larger and larger. After an ultrasound it's been determined that it is hardened tissue and edema, happening because the skin on the front part of my neck is tightening and cause my bones, muscles and nerves to shift and causing pressure on the nerves in the bulbar region, thus my bulbar symptoms.
Don't quite know what this means. The plastic surgeon does not want to do more surgery as he says I will have to be intubated and that there is a great possibility I will remain intubated and in IUC following surgery. So that's a no go.
I'm going to see a respiralitist next and they will determine my oxygen intake, I may be looking at a treachaeotomy, as for the past week breathing is becoming increasingly difficult.
In a way I'm kind of pissed off because now I don't get the help from the ALS Society in terms of treatment and equippment. I"ll be left flying solo in the breese. I guess I'll have to go through ODSP and other funding for when I'll need a chair and other equippment.
As I have gathered from my doctor my continued decline will be similar to ALS
