Re: anyone with similar symptoms? to Donna H

[Guest guest]

Hey Donna,

I live in Grand Rapids and my daughters see Dr ODonnell too!

If you want to talk, let me know.

> >

> > I can't talk much with family about the symptoms I

> > have been having

> > (or ones my younger son experiences who is not

> > diagnosed with mito)

> > because they obviously think I am reading too much

> > into things. Only

> > here will others understand why my concerns may be

> > justified. I

> > would like to know if other adults experience any of

> > these symptoms

> > or have a similar family history.

> >

> > My son is Craig, and he is 8 with unspecified mito

> > by way of muscle

> > biopsy. No evidence of problems with the complexes.

> > He was never

> > tested for maternal DNA deletions. I am not sure

> > why at this point,

> > but he saw Dr. Cohen who must not have felt it was

> > warranted. (This

> > is a question for his appt. with neurologist next

> > week.)

> >

> > My 6 year old, Dalton, has had some abnormal test

> > results, but not

> > enough to diagnose anything. He had extreme fatigue

> > that has been

> > virtually elimated by Carnitor. We give him CoQ10

> > also. He has

> > become progressively more hyperactive in the past

> > year or so. (a

> > major symptom for Craig). He has a lot of trouble

> > overheating and

> > has had some brief, seizure-type episodes before

> > starting Carnitor.

> > (Craig has seizures). Also, pain in hands, legs,

> > wrists, etc. before

> > Carnitor too. He seems to have memory problems. He

> > doesn't

> > remember things we just said or did. (Craig has

> > significant

> > problems with some kinds of memory- ie. " Where are

> > we going again

> > Mom? " over and over, etc.)

> >

> > I will soon be 40 years old. I have been having a

> > problem with very

> > stiff legs at times. It makes it difficult to walk

> > normally. I have

> > also had trouble with my muscles tightening while

> > laying in bed at

> > night, and it's difficult to get them to " let go. "

> > I have had

> > trouble walking straight in the middle of the night

> > a few times .

> > One time I tried my darndest to get to the door to

> > go out of the

> > room, but could not do it without falling over. I

> > finally gave up

> > and went back to bed. All these things come and go.

> >

> > Lately, my back quite often has pins and needles

> > across the mid to

> > upper section. (Perhaps this could be a chiropractic

> > problem?) I get

> > pins and needles in my hands and feet/legs quite a

> > bit as well.

> >

> > The things that bothers me most, though, is that my

> > thinking is

> > clearly not normal lately. ( Between me and the boys

> > it's beginning

> > to feel like a nut house around here!) I can't

> > remember something I

> > just did or recently said. Past events can be

> > difficult as well. I

> > just introduced myself to another mother at school

> > today who claims

> > to have met me and talked with me several times in

> > the past! These

> > kinds of things are happening quite frequently. I

> > also CANNOT stay

> > focused on what I am doing. I switch tasks

> > constantly and forget

> > that I was doing something else until I find

> > something cooking on

> > the stove or the dryer open waiting for clothes from

> > the washer,etc.

> > Our family has been under an extreme amount of

> > stress for so long

> > (family tragedies, Craig's progressive problems,

> > rebellious

> > teenager, on and on!) that I try to assume that is

> > the problem. My

> > memory does get better when things are going better.

> >

> > One more minor symptom I have is the need to urinate

> > quite

> > frequently without any evidence of infection. This

> > also gets better

> > when not under as much stress.

> >

> > Sorry to be so long and detailed, but I wanted to be

> > specific enough

> > to get some input if possible.

> >

> > If I should see a doctor I have no idea who to see,

> > and I wonder if

> > things are really bad enough to go yet. We live in

> > Michigan.

> >

> > THANKS!!

> >

> > Donna H.

> >

> >

> >

> >

>

> __________________________________________________

>