Re: anyone with similar symptoms? to Donna H.

[Guest guest]

> > >

> > > 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.

> > >

> > >

> > >

> > >

> >

> > __________________________________________________

> >

[Guest guest]

Donna,

We are in the Kalamazoo area and drive to Grand Rapids to the same peds neuro office as Dawn and e. We could not be happier and we see a different neuro than the two of them.

Tammyjayvelde@... wrote:

How do you both like Dr. ODonnel? I am working with a UofM neurologist and hoping to get through the learning curve with her. She is good, but doesn't understand the full extent of Craig's problems yet. Bringing video footage to her next week.

Donna,

I also live in Grand Rapids. Chelsea does not see Dr O'Donnel, but last year we made the switch and see another neuro in the same office. I could not be happier with him, and he is also very mito knowledgeable. I would highly recommend any of the neuros there, if you are not happy with who you already see. . .

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

THanks for your input, Dawn! I really appreciate it.

> >

> > In a message dated 4/22/2005 9:37:31 A.M. Eastern

> > Standard Time,

> > donnamichele@c... writes:

> >

> > How do you both like Dr. ODonnel? I am working

> > with a UofM

> > neurologist and hoping to get through the learning

> > curve with her.

> > She is good, but doesn't understand the full extent

> > of Craig's

> > problems yet. Bringing video footage to her next

> > week.

> >

> >

> >

> > Donna,

> > I also live in Grand Rapids. Chelsea does not see Dr

> > O'Donnel, but last year

> > we made the switch and see another neuro in the same

> > office. I could not be

> > happier with him, and he is also very mito

> > knowledgeable. I would highly

> > recommend any of the neuros there, if you are not

> > happy with who you already see.

> > . .

> >

> > e, Chelsea's mom, Atypical Rett Syndrome (FKA

> > nonspecific mito)

> >

>

> __________________________________________________

>

[Guest guest]

THanks so much for your help, e It really seems I am on the

wrong side of the state! I might be coming to Grand Rapids,

depending on how our appt. goes this week at UofM.

Thanks again,

Donna

>

> In a message dated 4/22/2005 9:37:31 A.M. Eastern Standard Time,

> donnamichele@c... writes:

>

> How do you both like Dr. ODonnel? I am working with a UofM

> neurologist and hoping to get through the learning curve with

her.

> She is good, but doesn't understand the full extent of Craig's

> problems yet. Bringing video footage to her next week.

>

>

>

> Donna,

> I also live in Grand Rapids. Chelsea does not see Dr O'Donnel, but

last year

> we made the switch and see another neuro in the same office. I

could not be

> happier with him, and he is also very mito knowledgeable. I would

highly

> recommend any of the neuros there, if you are not happy with who

you already see.

> . .

>

> e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific

mito)

[Guest guest]

Thanks, Tammy. I remember you said you go to DeVoss too. I will

seriously consider the trip out. We'll see how it goes this

Thursday with the U of M neurologist.

Take care,

Donna H.

(Craig's mom)

> In a message dated 4/22/2005 9:37:31 A.M. Eastern Standard Time,

donnamichele@c... writes:

> How do you both like Dr. ODonnel? I am working with a UofM

> neurologist and hoping to get through the learning curve with

her.

> She is good, but doesn't understand the full extent of Craig's

> problems yet. Bringing video footage to her next week.

>

>

> Donna,

> I also live in Grand Rapids. Chelsea does not see Dr O'Donnel, but

last year we made the switch and see another neuro in the same

office. I could not be happier with him, and he is also very mito

knowledgeable. I would highly recommend any of the neuros there, if

you are not happy with who you already see. . .

>

> e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific

mito)

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

> ---------------------------------

>