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Ataxia Support Network

Ontario, Canada Specialist for Cerebellum


#1

Am searching, and searching for a Neurologist In Ontario, that will take time and effort into my situation.

all the ones that i have seen, i don't fit into their category, then am out the door.

Have been tested for loss of cognitive as well, and I am losing it.. The specialist only

deals with dementia and Atlzmers (spelling check not find the word for me) ,

Looking for any ideas, for others in Ontario,

very sad, and frustrating

thanks

Mach6


#2

Where are you in Ontario? I am also in ON, near Ottawa. Feel free to inbox me a message.


#3

Hi, I am in Calgary. I have been to 5 neurologists who just send me to someone else. I do not expect a cure. I would like a specialist who would at the very least recommend things, send me to therapy, suggest supplements, something! Actually talk to me. If any Canadians find an ataxia specialist please let me know.
Thank you John for the doctor database, unfortunately I have been to the clinic on the list.
Good luck and best wishes to everyone.


#4

The neurologist should be sending you for a T1 and T2 MRI, a 24 hour urine test to check for Wilson’s disease and a genetics test for Fredric’s Ataxia, Huntington’s Disease and the limited 8 or 9 SCA types they will test for in Ontario. When you meet with the genetics doctor make sure you get tested for all of the things I listed, good luck!


#5

I have a neurologist and she really helped when I was applying for my disability but now there isn't really anything she can do so I just go to my family doctor and he monitors me. Unfortunately, it doesn't matter who you go to, there isn't a cure or a set standard of treatment so it's pretty much up to you to research and find things to try and see if it works. I recently went to my family doctor and asked him if I could have a referral for occupational, physical and speech therapy. He was all for it and very willing to refer me. I didn't know if this would do anything to help or not. These have been the best things that I have done. I'm still there but it has helped me more than I ever dreamed.


#6

Kay, who was the Specialist you saw in Ontario , I live in Burlington ON ,,, I do have one name, a Dr, Lang from Toronto.

I was seeing a speech therapist,,, I found very difficult tho repeat sounds over and over again,,, though i did learn that i read in my head the same way i read (speak ) out loud, so have got my self a reader,,,

I got myself a signature stamp , cause i cant always right,,

just some suggestion,, for helping life be a tat better


#7

I live near Toronto. I am always happy to find other Canadians on line especially in Ontario. It is a long time since this subject came up but maybe there will be new information. I have been diagnosed with cerebella ataxia and after numerous tests and one clueless neurologist I eventually got to see one who was familiar with ataxia. When I asked she said she had eight other clients with ataxia. She sent me for numerous tests and eventually for genetic testing in Toronto. An MRI confirmed the diagnosis but the genetic testing came back nonspecific. It was very informative though. It helps to have a diagnosis since then I have stopped seeing her and rely on my GP. No treatment was recommended but her door is always open.
Cindy


#8

Cindy, I don’t have Ataxia, it took 8 years for a Brain Centre (Carrick Brain Centre) in the states to say my symptom
were because of PTSD. I had thought I took myself off the group list. I just checked am still there though no
longer know my user name or password.
Sorry to here what your going through, though having a diagnosis does help rather than “it’s all in your head”

check out this centre, they may be able to help, there a Brain Balance Place in Burlington on Walkers that, could help
first, then move you on to the states. none of the treatments are covered by an plan.

try and stay positive, do what you can, try not to worry what your unable to do. that just adds more stress to us

good luck to you Cindy,

Dawn


#9

This may be a bit late, but just found this post. I also use the Movement Disorder Clinic at Toronto Western Hospital. Anthony Lang, Elizabeth Slow, and many others practice there. It takes about two years to get in unfortunately, you must be referred by your family practitioner or another doctor, but worth the wait!
I’ve found them to have very good “bedside manners” and that seems to be important these days. May other neurologists don’t seem to acknowledge them, (and I’ve had many). They know all types of conditions and know them well.

Dave - MSA


#10

Hi and thanks, I thought I took myself off the list.

I did find a centre in Burlington Ontario. That then send me to Atlanta Georgia in the States.

I do not have Ataxia. Mine was PSTD, blow my mind out the door. But am back to my normal.

Hope your able to find some success with Toronto Specialists
Dawn