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Kelly5538

Member
Joined
Nov 24, 2015
Messages
25
Reason
CALS
Diagnosis
01/2016
Country
CA
State
Ontario
City
Orangeville
Hello everyone. I'm new here. My husband has been doing all sorts of tests through his Neurologist because he now has no use of his left arm and losing the ability to move his left leg - and his right hand is starting to tingle. He's had numerous MRI's, CT scans, blood work, etc. and now is being sent to the ALS Clinic at Sunnybrook. (we don't have a date yet for that).

My question is - will you only be sent to the ALS Clinic if it's definitely ALS? Neurologist has not said the words but now being sent to the ALS Clinic I am so scared - for both my husband and myself and children. He's only 42?

Thank you in advance.
 
Hello everyone. I'm new here. My husband has been doing all sorts of tests through his Neurologist because he now has no use of his left arm and losing the ability to move his left leg - and his right hand is starting to tingle. He's had numerous MRI's, CT scans, blood work, etc. and now is being sent to the ALS Clinic at Sunnybrook. (we don't have a date yet for that).

My question is - will you only be sent to the ALS Clinic if it's definitely ALS? Neurologist has not said the words but now being sent to the ALS Clinic I am so scared - for both my husband and myself and children. He's only 42?

Thank you in advance.

I'm sorry to hear you're stuck in a very scary place--looking at ALS coming at you but not having a date to confirm it.

You need to ask the doctor why you're going to the ALS clinic. Possibly to rule out ALS?

In any event, now it the time to prepare and plan. Buy or maximize your life insurance before you get a diagnosis. Organize paperwork for claiming disability benefits. Ensure you understand the medical diagnoses and the tests.

Call everyday to get that appointment. It would be best to rule out ALS as soon as possible.

Good luck to you all. Stay in touch. --Mike
 
Hi Mike. Thank you for the quick response.
Funny, right after I posted this - hubby got the call that his apt at Sunnybrook is next week (so much faster than I had anticipated - not sure if that's a good or bad sign).
We have insurance through his work and at this point since he has been seeing a neurologist I can't imagine him being approved for anything more - and he is already on short term disability from work because he's not able to do his job.

I'm just really scared. We have two beautiful daughters and as selfish as it sounds, I'm so scared to be alone without him.
 
I'm just really scared. We have two beautiful daughters and as selfish as it sounds, I'm so scared to be alone without him.

IF, in fact, this turns out to be ALS, you'll find strength you never knew you had. Wishing you the best.
 
I would guess you are being sent to Sunnybrook to be seen by a neuromuscular specialist. Yes you can specialize a specialty. You will be seen by either Dr Zinman or Dr Izenburg, both very highly regarded in their field. If you need to be there it is sort of one stop shopping. All the Drs and therapists are there to give whatever you may need. They will also set things up with the ASL society, CCAC and provide help with other government services.
Vincent
 
Thank you Vincent. How often do you have to go there?
 
Of Late about every 3 months, unless something changes. If you have concerns they can usually get you shoehorned in on the next clinic. My next visit is Dec. 8th.
Vincent
 
He is seeing Dr Petrescu?
 
Well our visit to Sunnybrook was Tuesday. Everyone there is fantastic. Still no diagnosis but we are going back in a month at which point they will do a follow up test (the electric zapper one?) And will have all of the blood results back so the neurologist said at that app we will then sit down and have a discussion about it..... with a diagnosis whether it is ALS or "maybe something else very rare that hasn't shown in any prior tests". Doc said that hubby was sent there to get a second opinion as the first doc thinks ALS.
 
Thanks for the update. Good luck with the diagnosed.
 
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