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Following Carinara's Post

Mary P

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Hi Mary!

There are several of us here in Canada..

A good way to make contact is to join the Dinet Meet Others Program..you will find fellow sufferers there that perhaps dont post too often..like myself ..but who enjoy having regular contact with each other for support ,information and sometimes just a chat.

I live in BC and was diagnosed with dysautonomia in 2002 after 2 years of searching for answers .I finally got my diagnosis after testing in Montreal with Dr Schondorf..who I would strongly recommend. ..there are also a couple of docs in Hamilton who have an autonomic lab and who are supposed to be very good .

There is also a doc in Calgary ..an EP with a strong interest in syncope ..

I`m fortunate at present to have two very knowledgeable ANS docs in Vancouver..although one is just about to retire.

Please contact me if you would like more detailed information and I would be happy to hear from you anytime!



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Thanks to all of you, Mighty Mouse, Margaret and Laura for responding to my 'wondering'. There are days when I feel so down, so unworthy, because the response from my doctor is still, "a) I have never heard of IT... Dysautonomia, Autonomic Failure, Midodrine, necessay testing, etc, etc, and :) I don't know anything about it". However, the Neurologist who diagnosed Orthostastic Hypotension said there may be someone in Kingston, Ontario, who might help.

Three weeks ago I asked my doctor to try to make an appointment for me in Kingston, but I still haven't heard anything. This is unusual because I've always heard about other specialist appointment within the week. I'm wondering if she forgot to contact Kingston or if no one there knows anything so haven't responded to her. It seems that I'm always waiting and then being let down again.

No matter what the emergency, I can see my doctor only once every 2 months. I won't see her again until June 18th. I sometimesa think that someday I could die because of this. She knows nothing about my situation and has 't tried to learn. Neither does anyone at a clinic or the hospital here. I've phoned 3 clinics which are part of renowned hospitals in Toronto and no one there has heard of my condition. Once when I begged for an appointment I was told, "We have 5 doctors here and 10,000 patients.

If I could get a good day, I'd go and see the woman who's in charge of making the appointment and see what's going on. The days when I feel well enough to get out are few and far between.

Margaret, and Laura, thank you so much for your kind offers of help. You have both said that I can contact you at any time. How do I do this? Shortly after I joined this forum on April 15, 2008, I signed on to the 'Meet Others' programn, but I haven't heard anything from anyone yet. Perhaps I just need to wait longer because I just have to believe that there's someone in the Toronto area that has this condition.

Margaret, I'm so glad that you mentioned Dr. Schondorf. In my own www research I learned about him and also the clinic in Hamilton. I'll mention Dr. Schondorf to my doctor during my next visit. I hesitated to mention him to her bere now because it will be at least a 7 hour car journey and that will be hard for me. By the time I arrived I'd be having a really bad 'potsy' day. I've learned the word 'potsy' on this forum. A good friend would take me.

I think it might take 6 hours by VIA but I just can't imagine ever being able to make it through the Montreal Station and down to the street to gat a cab. I know the Toronto Station well, and also know that I'd never survive a walk from where we get off, down to the street. My legs just wouldn't get me that far and besides the crowds would throw me completely off balance and I'd fall.

Margaret and Laura, you have said that I can contact you if I have any questions. How do I do this. Shortly after I joined the Dinet family, Isigned up for the Meet Others program but I haven't heard anything back from anyone.

Some questions I can ask you now, Margaret, are:

1) What sort of tests did Dr. Schorndof give you?

2) How long were you at the clinic in Montreal?

3) Did you have to have any blood work done before you saw him?"

4) Did he send recommendations to your doctor? (As I've said, my doctor knows nothing".)

I'm willing to stay for as long as it takes in Montreal, but am wondering how long this will be.

Thank you again. I think I finally see some hope ahead for me.


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Mary, Do you know how to check your private messages (PM) on the site? At the top of the page you should see "My Controls" "view new Posts" "My Assistant" "My Friends" and "New Messages" If you click on New Messages it will bring you to the area where you can recieve and send private emails to members. This way you can chat with people like Margaret or me more indepthly without worry of disclosing your more personal info on the internet.

For me, Margaret has been a wonderful support and has much information that she's been wonderful about passing along. I hope if there is anything I might be able to help with, that you will feel welcome to talk to me as well. I am with the meet the others program as well (Laura) and would be glad to talk with you. I haven't had experiences with Dr. Schondorff so I don't have much to help in that area, but I can certainly understand dealing with doctors that don't know about this condition and how hard it can be to get assistance and even validation for your concerns.


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