I'm new with lots of questions!

March 25, 2004

I'm a 37yr-old Canadian and currently being investigated for

mitochiondrial disease. I'm really curious to know at what point

other people knew their varied symptoms were all somehow tied

together and how (and where!)they've acquired a diagnosis. My own

symptoms are episodic; however, over the last year the episodes are

progressively longer and more debilitating. I struggle most these

days with exhaustion that I would characterize as " feeling barely

animated " , shallow breathing, the sense that the act of taking a

breath is a huge labour, a full-body sensation of not having enough

air, eyes that tire easily and often feel as though they're

being " pinched from behind " , sloooow passage of food, food aversion

and nausea, difficulty recalling things and brain fog.

Any thoughts?

Amy

March 25, 2004

Hi Amy, and welcome!

It sounds like you're in the right place. How have you been

progressing in your quest for a diagnosis in the Canadian health care

system? It's difficult in the US, and I can only imagine how much

more challenging it must be for you. Where in Canada are you?

I found out the hard way that my symptoms were a result of a

mitochondrial disorder. My first daughter died from undiagnosed mito.

Theresa

> I'm a 37yr-old Canadian and currently being investigated for

> mitochiondrial disease. I'm really curious to know at what point

> other people knew their varied symptoms were all somehow tied

> together and how (and where!)they've acquired a diagnosis. My own

> symptoms are episodic; however, over the last year the episodes are

> progressively longer and more debilitating. I struggle most these

> days with exhaustion that I would characterize as " feeling barely

> animated " , shallow breathing, the sense that the act of taking a

> breath is a huge labour, a full-body sensation of not having enough

> air, eyes that tire easily and often feel as though they're

> being " pinched from behind " , sloooow passage of food, food aversion

> and nausea, difficulty recalling things and brain fog.

>

> Any thoughts?

>

> Amy

March 25, 2004

Hi Amy The good news is that it's not common so you hopefully

don't have it. There are so many things that can cause the symptoms

that you described and many of them are treatable (like thyroid

disease). You didn't mention what kind of diagnostics are being

done or have been done, but hopefully you have seen a rheumatologist

and neurologist along with an internist.

No matter what your disease or condition is I would highly recommend

that you listen to your body and rest when you need to. It's also

important that you stay well hydrated (8-10 glasses of fluids) and

avoid caffiene and alcohol completely. It's also recommended that

you eat frequently throughout the day (small meals including some

carbs) and not let yourself get to the point where your starving.

Try to take note as to when you have more symptoms (end of the day

vs beginning of the day) and reduce stress whenever possible.

Good luck in your quest and welcome to the group !

bug

March 26, 2004

Amy

It took me 15 years to get a diagnosis. I starting feeling all the symptoms

were related about 5 years into the search. No one thought they could

possibly be connected, so the search went on. I had a live muscle biopsy in

Atlanta and got a diagnosis. Good luck on your journey.

laurie

>

> Reply-To:

> Date: Thu, 25 Mar 2004 18:38:06 -0000

> To:

> Subject: I'm new with lots of questions!