Hey, it's me again. I went to the Neuroligist last week where I live (Sudbury, Ontario, Canada) and had a bad experience with her. Just her overall demeaner was tragic. I had seen her initially and she hadn't even looked up or made the attempt to know what Kennedy's was all about.

I am a little distraught, especially considering that I have experienced and increase in muscle cramping and fascilations.

So, my question is this: Are there any KD knowledgable Neurologist in Ontario, Canada. If not, how about the border states like Michigan or New York.

Any help my friends, is greatly appretiated.

In solidarity and trust...

Dan.

Regrets about your experience with the Neurologist. Winnipeg has a few Neurologists familiar with Kennedy's (apparently there is a cluster in the Anishanabee of NW Ontario), but that's a long way to go. You are doing the right thing, it's a big help to have a doctor who is dialed into this disease.

Cam:

I am First Nations Ojibway from Shawanaga. do you have any other information about the cluster of Nish from the northern Ontario area?

Dan.

Dan, contact Dr. Mark Trifiro at McGill at the SMBD-Jewish General Hospital in Montreal. His email address is: mark.trifiro@staff.mcgill.ca

Ask if he knows of any neurologists in your area that are familiar with KD. Let me know if this doesn't work and I will continue to look.

Hi Dan
My neurologist was doing work on Minamata disease (mercury poisoning) in the Grassy Narrows area, and due to his past experience and personal excellence, found a pocket of KD in the native population. Don't know much past that; I could check if there is specific info you were after.
Cam

Bruce/Cam:

Just got back from the cottage, was a wonderful cool weekend. The Loons were singing on the lake and the moon was crystal clear. It was one of those moments that made you feel great.

Bruce:

Thanks for the link,I will contact Dr. Trifiro and try to get an appointment with a KD friendly Neurologist

Cam:

If there is any infomration that you could link me to, or a contact number and name, I would really appreciate it.

You are noth gentlemen and scholars

Miigwetch (Thank you in Ojibway)

Dan

Since their is little a doctor can do as far as treatment or cures at this point about all you need is someone would can help with symptoms that are common to many neuro-muscular diseases. About the only prescription med I know of that is even being tested is dutasteride and most any doc can write script for it since it has been approved to treat BHP (and since most of us have BHP-like symptoms....) Hopefully one day soon this will change and then being connected to a doctor in the know will be more important.

The trick is to get a firm diagnoses (if you feel you really need one) without getting your wallet biopsied in the process. If you have SBMA in the family tree get the genetic test for SBMA. Make sure your insurance policy is firmly in place first as getting a new one will be expensive after the diagnoses.

I was lucky in that my first local doc wasn't reluctant to pass me up to the next level where they diagnosed SBMA in 10 minutes followed up by the genetic test to confirm. The local doc hadn't seen SBMA and about the best I got from her was good referrals to local specialists in various disciplines that I will need at some point. Best to get established at your leisure.

I got establish with a MDA doc (free) a couple hours drive away to get plugged in with someone who at least had seen SBMA patients. I don't expect I will be seeing him again until something breaks on the treatment/cure front. Until then I'll just keep watch here on the KDA forum.

I don't know how much of the above applies in Canada with socialized medicine. It would be real interesting to hear how folks with SBMA are fairing with the medical system up there.

My experience with medicare has been great. My GP recognized KD, referred me to a Physiologist, who referred me to a research Neurologist who was familiar with KD and had KD patients, who did the genetic test and did extensive baseline studies. All within 2 months and 35 Km of home (Manitoba). No thoughts of costs or whether or not I would be covered.
How has the privatized medical environment worked for folks?
The benefit I have found with a doctor familiar with KD is his experience. Is a medical problem a part of KD and part of the experience, or is it a separate issue and treatable.

quote:

Originally posted by Dan LADOUCEUR:
Cam:

I am First Nations Ojibway from Shawanaga. do you have any other information about the cluster of Nish from the northern Ontario area?

Dan.

Hi Dan

In a very informative and interesting online article I read about KD, http://www.emedicine.com/neuro/topic421.htm
the author, Dr. Paul Barkhaus, MD, recounts that Dr. Kennedy's first KD patient was a 57 year old man "of French and Native American ancestry from Minnesota". I found this fascinating, because my husband, who has KD, is also of Metis heritage - born in Manitoba, but some of his native ancestors were originally from the Fort Francis area and also Minnesota. Between the fur trade and buffalo hunts, there was a lot of movement, back and forth over the borders in the 17 and 1800's.

Dan, My husband's Neurologist has been great she has KD patients other than just my husband. She is with The Jacobs Neurological Institute at Buffalo General Hospital in Buffalo, New York. Her name is Angnes Supala-Berger, MD 716-859-7501

Thanks Janet for the information about your Neurologist. If I can't find one closer, I will definitely give her a call for an appointment.

Dan