Genetic testing

[gerri]

Hi Everyone

For over 4 years I tried to get genetic testing at McMaster Children’s Hospital in Hamilton, ON - to find out about 2 months ago - they no longer do genetic testing. So I reached out to a company offer genetic testing (Alberta) - similar to 23 & me - to find out they only test you to see if you are a carrier. They could not answer my questions - left me total on hold - on the phone. That same day I contacted other genetic labs and found that at Mount Sinai hospital (Assoiciate - “Adults Genetics Clinic” Toronto, ON) offers genetic testing - counselling - will accept my referral from my family dr.

I need to know your thoughts to what my dr. should put in his referral notes. I am asking for Genetic testing for: HFI, glycogen storage disease, wolfe-parkinson-white syndrome and celiac disease - so far. I have other autoimmune diseases not sure if they are needed to include in the referral. My next dr’s appointment is for end of November. It will take a couple of months after the referral to get into see the genetic counsellor. If they think I warrant genetic testing it will be paid by the government.

Wish me luck

Gerri

[ukbill]

good Luck

[gerri]

Hi Everyone,

I finally have an appointment with the genetic testing clinic in Toronto at the Toronto General Hosptal as a new patient - but the appointment is not until October 29th of this year. I have two appointments at the same time - not sure why - I have a call in just to confirm that is correct.

I am happy this is finally happening.

Gerri

[colormist]

Sheesh. That's a heck of a wait. I'm glad you were finally able to get in!

[rysmom14]

I wish they could see you sooner Gerri, but i'm glad you are finally getting your appointment

[colormist]

Yeah, I think October will be here before you know it. And really, you've already got us for any HFI-related questions and are already doing all the heavy lifting on discovering what diet works best for you. If you feel like it, you could also keep a food diary up until then to provide them with a food/symptom history.

Man, I just had a neurologist lecture me for not getting in to see him sooner (it took 9 months to get to the point where my insurance would permit me seeing a neurologist). Sometimes these things take a long while to get to where you need to be to find your answers. The medical systems everywhere just seem to require endless patience.

[gerri]

Quoted from “ukbill”
“Current research in the US is indicating a very strong link between Fructose containing drinks and the age that Alzheimer's kicks in at.......

Quite why Fructose is implicated in Alzheimer's is as yet undiscovered but you can bet many millions of dollar's are being spent trying to find out why and how to stop this happening......”

Thanks to the board members here who have guided me since I have joined this group.

I was looking up a possible link from my father’s side - knowing my cousin was diagnosed with HFI as a baby .... but couldn’t find out where if anyone was diagnosed on my mother’s side. I read the above quoted message from “ukbill” - I believe I found my answer. I am hoping by my following the HFI diet - (I have been diagnosed with HFI - through diet related challenge) - but now I need conclusive proof - for my children and my grandchildren - so that I can possibly stop - a possible progession of Alzheimer’s disease. My mother’s family all had Alzheimer’s disease.

I am hopefull the appointment as a new patient at the genetic clinic will finally give me the answers This I have been advocating for myself for the last nearly 6 years.

The appointment will not come quick enough for me.

Hugs everyone

Gerri