Hi All

[Ronja]

I recently had an EMG and at the end of the test the neurologist told me I had varaint of als she also is sending me to a als specialist whom I am booked to see in 2 months. 4 years ago my left foot went numb then I lost the use of everything below my left knee. I was able to keep working with a limp and understanding boss. Last Aug. I was in a car accident aweek later my right foot started going numb and my good leg(right) is getting weaker. The worst thing about all this is that my wife is an invalid and is in the first stages of dementia. She doesn,t understant what is happening to me. So I know from all I have read here that most here understand.

 

[Nikki J]

Very sorry. I hope that the ALS specialist has a different answer. It does happen, especially if the original diagnosis came from a non neuromuscular neurologist Did you ask what she meant by " variant"?
The situation with your wife is heartrending. I hope you have other support people

 

[Atsugi]

Terrible. Your situation is the worst.

Consider crossing the border to get a sooner appointment.

 

[MaxEidswick]

>she also is sending me to a als specialist whom I am booked to see in 2 months

best next step. good luck!



Max - Wednesday, April 08, 2015 12:50:38 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Ronja]

Hey thanks it really helps being able to share/talk. At the moment i don,t know what is wearing me out more als or my wifes dementia. I have yet to get help yet but it is on my todo list . Right after my EMG I felt weak for about ten days my fall rate was 5/week. Now I feel a little better but I no longer trust my left leg and most weeks now I don,t fall at all. If I sometimes don,t make sense I am just tired the wife had a rough nite which means i had one too.
Well still standing still loving life and wife.

 

[anderkling]

I'm assuming your specialist appointment is at the ALS clinic in Vancouver at GF Strong? I live close to you (in Langley), so if you need help navigating the system here, or just want to share your thoughts and questions, send me a private message on the forum by clicking on my username. I'm sorry to hear about your particularly challenging circumstances.
- Charlene

 

[GregK]

Charlene, I don't think newbies can PM.

 

[Ronja]

Thats right i have to buy a membership to pm i think and i can,t do that yet. But it is nice to know your nearby I go to a church in langley when i can that is.

 

[Ronja]

not gf strong i am suppose to be getting a referal to a rehabilitation dr there but i can,t seem to be able to confirm that yet. I had my emg with dr gibson who did the als diagnose and is refering me to dr Briemberg(the als specailist) for a second opinion both at the Neuromuscular Diseases unit of VGH.

 

[laurel]

Ronja my husband was diagnosed with CIDP at VGH Neuromuscular Disorder Clinic. They were excellent there. Supposedly the best in Western Canada.

 

[affected]

You don't have to purchase membership to be allowed to pm, you just have to be a member a little while and post around the forum. Kind of proves you are real and not a bot.

Visitor messages can be done however