Canadian Connections?

[carmen]

Hi everyone,

I posted earlier on all of the symptoms that I am having, and am currently waiting on the doctors to help me. Nobody here (in Saskatchewan) seems to have heard of POTS, and yet it is so similar to what I have. My symptoms are seeming to be worse. I was so lightheaded all morning, I could barely move. I am so weak that I can barely have a shower!

Just wondering if anyone knows of any doctors in canada that can help me out, that know of POTS, because it's been over a month here, and none of the doctors here have a clue.

Thanks!

Carmen

[MightyMouse]

You might want to try asking your question on the NDRF forum, which you can get to by registering with http://www.ndrf.org

I know there are several Canadian's on that discussion forum, and they've mentioned a specialist in ....hmm...Montreal, I think? I know that's a LONG way from where you are, but might be worth a shot. However, the Mayo Clinic in Minnesota within the US might be closer for you.

Nina

[Guest tearose]

Hi Carmen,

If you are close to Mayo Clinic in Minnesota and can swing it (insurance, time and energy) then go there! Or, maybe you need to stay in Canada?

I'm sorry that I have no first hand knowledge of what is happening in the field of POTS in Canada. I did recall reading that there was some international conference held in St. Thomas, in November, 2003 and Canada presented there. When I did some research I kept seeing a Dr. R. Schondorf in the literature for both orthostatic intolorence and neurocardiogenic syncope. Also, there is a highly regarded medical university and hospital "McGill" in Montreal, QC. I would suggest you give this doctor a phone call and try to talk to him. If that doctor can't help you I'll venture a guess that he/she will be the best person to tell you who can! Also, call McGill university hospital and ask them for guidance too. At least someone should be able to explain to your local doctors how to help you. I didn't have the energy to hunt down the telephone numbers for you, sorry. Here are the two websites I found with related information:

http://www.mni.mcgill.ca/

http://stroke.ahajournals.org/cgi/content/...tract/28/8/1564

Good luck, keep us posted on what's happening "up there", tearose

[justin]

hey. i live in toronto.

i've heard mixed reports about dr. schondorf, but he and his colleagues are the only real specialists in canada i've heard of (although there may be one in hamilton, ON too).

[pugszhill]

I live in Ontario and I also have POTS. I have been seeing doctors in Hamilton for 12 years now. A new doc named Dr. Carlos Morillo just came from Columbia and he is very up on POTS. He and Dr. Grubb have trained together. I also go to Dr.l Grubb and have for 4 years now. As for being dx I had ot go to Vanderbilt University in Nashville. I tried to get dx for 9 years in Canada covering all of Ontario and was told I was nuts and everything else. Finally OHIP (provincial health coverage) paid for me to go for testing and be admitted for 1 week to Vanderbilt. I was dx in 4 days. That was the best thing I ever did. They advised me to go to Dr. Grubb and even though I have doctors here they aren't as good at treating POTS as Grubb is. They take his advise and treat me in between visits and fill scripts but that's about it. Grubb is my leading doc and the head of all my docs up here and they all look towards him for help. I had a negative experience with Dr. Shondorf. Dr. Morillo in Hamilton is the only doc on Ontario and mainly Canada that is up to date on POTS.

Feel free to email me if you would like.

Janette

[Jess Green]

Hey there I know this a long time ago but I was recently diagnosed with POTS, living in Saskatchewan. Wondering How many others in sask out there, nobody has heard of POTS or any kind of dysautonomia. Looking to raise awareness or build a support group. Any updates to this post??

[Clb75]

Dr. Satish Raj used to be at Vanderbilt but now is at the university of Calgary. Not sure how close that is to where you are but thought I'd mention it in case you're looking for a doctor.

[DaniH]

There is another POTS specialist in Hamilton. His name is Dr. Juan Guzman. Unfortunately in the long run it didn't work out but one very good thing about Dr. Guzman though is that he will try almost anything. At one point I was injecting myself erythropoitin to see if my POTS would improve and I'm still on IV fluids because he started it. I currently have no doctor. I heard there was a POTS doc in London, ON but he is on the neurological side of POTS. Which may suit myself and others better if, like me, you also have EDS and Chiari Malformation. I will try to find his name.