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I've got it!


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Hi everyone,

For those of you following my story you remember that 6 months ago I was put on a waiting list to go for testing with a neuro-muscular disorder researcher specialist. I've just got the phone call this afternoon and I have to be there tomorrow morning. It's a 3 hours drive. He specialises in rare disorders and he likes challenges. I hope he will like me!

I will have multiple tests to find what is going wrong with my muscles.

I am so excited but I wanted to take some time to share the good news with you.

Can you believe that I got that excited going to the hospital? I would have never thought that when I was "healthy".

Please send me good vibes!



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Ernie - Thats wonderful news! I dont think its odd to be happy about the hospital....It is the thing that might give you some answers.. Good Luck and I'll be thinking of you !

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That is fantastic, especially for Canada if you know what I mean :(

I would love to hear more please. Are they familiar with any of your, already, diagnosisis? What kids of tests do they do there? How long will you be in the hospital? What kind of degree does this doctor have? What kind of muscular disease do they think you might have or did they say?

I know I'm missing some questions but that's a good start :)


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Thansk everyone for the good wishes.

I am glad you are there for me. Makes me feel more "in control" if you know what I mean.

I am suppose to be there for 4-5 days. I will start some testing tomorrow and other tests will have to wait a few days because I have to be weaned from my meds and I cannot stop my meds at home because I am completely non functional without them.

I have no idea what tests he will run as I asked him when I saw him in September and he told me that the hospital will decide.

The reason my PCP referred me to him is that he specialises in rare muscle disorders in isolated areas of Quebec. Since my parents are blood related there is a high probably that I am stuck with another rare disorder!

They think I might have some form of periodic paralysis or myotonia.

This neurologist is a researcher and he rarely sees patients. He only takes difficult cases! I don't know if he knows about my other disorders but I told him that I faint and that I have an unstable BP. I only spent 15 minutes with him and he did not really take my medical history because he had already decided that he wanted to study me and would get a complete picture once I am there. I guess he is in for a surprise!

He told me that my case is very complicated and cannot be diagnosed in 15 minutes. I said that this is the reason I see him because I heard that he likes challenges and that he is good at it. (His boss did Med school with my PCP 20 some years ago). This is the best hospital in Quebec for muscular disorders. People there have strange disorders (genetic recessive) because of the blood relationship of parents so doctors like to test their inhabitants because they learn a lot.

Still so excited.


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OH MY Goodness Ernie!! That's terrific news--refreshing to see some really great news tonight!

I hope that they are able to find answers and a better way to treat what's going on with your body.

Nina :)

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I don't know if you'll read this in time before you go to the hospital, but I pray that you find some answers and treatments that will help your health improve. I'm very glad you're getting this opportunity. I hope it goes well for you. We'll all be keeping you in our thoughts while you're away. Best wishes on this journey! :)


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Guest tearose

Ernie! I'm so excited for this opportunity for you!

I hope the days are packed with good information, medical information and a nurturing environment!

Can't wait to hear all about it!

Is your POTS travel bag ready?

Stick this extra hug in from me for when you need some extra support!

((((HUG)))) good journey my friend, tearose

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