Looking for help

[Guest guest]

Hello,

My name is and my boyfriend has MNGIE. We live in Ontario

Canada and I am looking for any information with regards to treatment

or names of doctors in Ontario that specialize with this disease. He

is currently seeing a doctor but there seems to be little progress.

The action plan seems to be very reactive, we all wait for him to be

hospitalized then take action for a few months then stop again. It

has become very frustrating and I am at a loss as to what I can do to

help. Any advice or information would be appreciated.

Thank you,

[Guest guest]

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There is a very good doc. at Columbia Medical in New York City who treats MNGIE. His name is Dr. Hirano. I have symptoms that match MNGIE but my thimadine kinase level was normal. I'm actually going to see Dr. Hirano next month. He is excellent in his field. I wish your best in your search and answers for your boyfriend.

[Guest guest]

Hi ,

Where in Ontario are you guys located? I'm originally from Niagara Falls. There are some mito docs in Hamilton at McMaster (Dr. Mark Tarnopolsky) and also some in Toronto but I can't remember the names. There is a big mito group in Montreal that I could find you info about. Thats where my biopsies went a while back. There are others from Ontario in our groups. I would suggest typing a new e-mail and putting "calling all Canadians" in the subject line. You might get more responses. There are two groups for adults with mito also; and adultmito that I would suggest joining. Mitoldies can be joined the same way you joined the mito group. I think you need an invitation for the adultmito that we could get you if interested. I don't know much about MNGIE but you will be able to get alot of support and information from these groups. We also have chats on the MDA site on Monday evenings at 9:00. Feel free to join us. If you have more questions feel free to ask. Thats what we are here for.

S