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vanclumbers

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According to my neurologist I have neurological disease. I have had an MRI which ruled out MS but I need NCS and AMG testing before he can decide if it is ALS or something else unpleasant. The problem is that the wait time for testing is 7 months. I could go over the border to WA State but testing there costs huge money, which I do not have.
Can anyone suggest a way of getting a diagnosis in Canada (preferably BC) sooner?
 

Atsugi

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II'm not familiar with Canada. Other people are. But I have two questions for you that might make a difference.

1. Give us some details WHY your neuro is concerned. What symptoms do you have? Is your walking, talking, or buttoning your shirt affected?
2. If, tomorrow, you were proved to have ALS, what would you do with the information? Would you live life differently if you had an expiration date?
 

ShiftKicker

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I got my diagnosis in Vancouver and surrounding areas. Although you can read my entire diagnostic process back in May, 2015, in the DIHALS section, I will give you a quick run down.

The general neurologist I went to had an emg in his office and used it because of what he found in his clinical examination. He then sent me to a neuromuscular specialist who also happens to be one of the ALS clinic neuros at GF Strong for a second opinion. She also had an emg right in her office. From start of first obvious neurological sign (drop foot) to "official diagnosis" it took a total of 7 months. Between all my appointments there were referrals for CT scanning, blood tests, more MRI's and a visit with a neurogeneticist to see if she saw a pattern that indicated some hereditary neurological disease.

So, having said all that, 7 months is a relatively normal wait. If you wish to maybe speed things along, contact the office of where you've been referred to for the emg and let them know you'd be happy to be on their wait list and let them know how much notice you need. (I usually say I only need two hours). This has got me through a few doors much sooner.

While it seems like forever, 7 months is actually pretty decent. It will also allow for continued observation by your neuro. How your symptoms progress can provide your doc with more clues about what is going on. I am assuming he has referred you for blood tests to rule out a whole variety of things that can cause neurological symptoms?

I will be frank, if your doctor though it was super urgent, you would have been booked for an emg way sooner. I am no way dismissing how urgent this feels for you- just that the doctor does not think it's an emergency. You can always call your neuro and ask how you can be seen earlier by someone. Or, as you say, you can pay out of pocket in the US.
 

Firefighter58

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In Ontario it took me about a year from start to final diagnosis, but like Mike says, what is your rush. If you are diagnosed nothing can really be done.
Al
 

vanclumbers

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Thanks for the info. Only problem is that there has been no requisition for blood work. The AMG and NCS is the next step in September and he is not seeing me in the interim. Maybe he will order the bloodwork at that time.
Bob
 
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vanclumbers

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In Ontario it took me about a year from start to final diagnosis, but like Mike says, what is your rush. If you are diagnosed nothing can really be done.
Al

Two reasons for wanting to know:
1. My wife is being driven nuts by not knowing. I can stick my head in the sand until September.
2. I would like to spend a little time and money that I may not going to need for retirement on a couple of bucket list items while still relatively mobile. Self-indulgent I know, but there you are.
 

vanclumbers

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II'm not familiar with Canada. Other people are. But I have two questions for you that might make a difference.

1. Give us some details WHY your neuro is concerned. What symptoms do you have? Is your walking, talking, or buttoning your shirt affected?
2. If, tomorrow, you were proved to have ALS, what would you do with the information? Would you live life differently if you had an expiration date?


I have the following:
• Muscle wasting in legs, arms and small muscles of the hands.
• Leg cramps.
• No obvious ALS muscle twitches, but I understand this is not compulsory.
• Very poor balance (would fail roadside sobriety test every time). Terrible balance in poor lighting.
• Foot drop in both feet.
• I fall often.
• Muscle weakness in legs, feet and hands.
• No ability to button a shirt.
• I need a cane to walk on anything but a perfectly flat surface.
• I need to sit down every 200 yards walking - leg muscles tired.
• Tired most of the time.
• Neuropathy in lower legs and hands, but that could be diabetes I suppose, but it has come on very quickly in the hands.
A few of these could be diabetes related but the symptoms happen on both sides of the body at the same time, which would be unusual for diabetes. I saw my diabetes specialist two weeks ago after not seeing her for a while. She watched me get out of my chair. She said "You have a neurological disease. Is it MS or ALS?" She does not pull her punches. I like that.

I would definitely live differently if I knew. There are a couple of things I would want to do before I lose mobility, and I would want to see my family in the UK. Critical illness insurance will fund this if and when I am diagnosed.
Bob
 

lgelb

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Hi Bob,

No other neuro testing options in BC? Or elsewhere in Canada? What is the neuro's rationale for the long wait (I assume there, as here, the squeaky wheel's patients get moved up)? Can another doc such as your diabetes doc intervene?

I'm not convinced you have ALS without knowing more, but if your account is accurate, you should be tested on all fronts, like now, to see what the problem is. How quickly did all this arise?
 

Nikki J

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Maybe with the more detail our Canadian members can comment further on ways to speed things up. I understand your concern.

2 things
What do you mean you have neuropathy in your feet and hands?

You state symptoms seemed to happen at the same time on both sides of the body. This is not the usual way for ALS. Limb onset generally starts in one extremity, spreads within that limb, then usually attacks either the other limb on that side or the limb opposite the one originally compromised.

Good luck. Whatever this is I hope you find answers soon
 

Bestfriends14

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Hi Bob,

Can you pay to go private in B.C.? There are private pay options available for B.C. residents but you need a requisition from your doc first. Although I know our health system is slow in B.C., I'm quite surprised that your doc has not expedited anything much sooner if you have so many issues. I would call your doctor back and be that squeaky wheel to get moved up the wait list, or see where you can go for a private clinic. They abound here in Alberta, so you may want to go that route, as well. It is about a $1000, but at least that is $1000 CDN, not USD like if you went to WA. Again, you need a requisition from your doc.

Be that squeaky wheel, Bob, and call your doc today and tell him you fell or something and how worried you are but you need to be seen ASAP. Being that squeaky wheel does help, even in our slower medical system. I'm a loud mouth when it comes to my health so I know first hand that that louder you are, the faster they can move you up.

Good luck and please update as to what happens.
 

KimT

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Bob,
I would pay the $1,000 if you can get an EMG quickly. I don't blame your wife from worrying. When they do the nerve conduction part of the test, they will be able to look for many other things. Getting to the bottom of the puzzle would be first on my bucket list. You might have something that can be treated.
 
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