Re: anyone with similar symptoms?- Darla

[Guest guest]

Thank you so much for your reply, Darla! Especially for sharing your

experiences with memory problems. I too have to laugh or I would

cry!

What do you do to treat your problems? Did the doctor prescribe

anything for you? Do you treat yourself with the same supplement as

your kids?

I am having a hard time, and I know I shouldn't be, but I do- with

taking care of myself. I just brush it off, think the symptoms are

too minor, don't want to spend the money on supplements for me, and

haven't gotten into any routine for my health. I can barely keep up

with the kids!

And then there is you, handling so much more than me. And taking the

time to reply so fully. I have no idea how you do it (other than

the grace of God, I know!). THANKS.

Donna H.

> I have dealt with several of the same symptoms myself so I

don't think

> you are overreacting. I have had problems walking in the dark for

many

> years and many times will try to aim for a certain place only to

stumble

> sideways and " bounce " off the walls as I go. Equilibrium problems

I always

> say or night blindness. I also have had many of the leg/arm pains

and

> prickles. I get them much more often when other things are also

going on

> and fatigue is quite bad. I will get leg cramps and terrible

aching from

> the muscles overworking even though I am doing only the bare

necessity

> things. At times holding a phone or just stirring muffins has

been

> impossible. These things can be very frustrating and thankfully

most of the

> severity of my symptoms have not been present over the past few

years. I

> too deal with recall problems and other memory issues. Dr.

Whiteman himself

> has mentioned he has noticed this problem with me. I have to

laugh it off

> cause otherwise I would go nuts. When trying to scold one of my

kids it can

> be quite annoying to forget a certain word in my sentence. You

can

> understand how the power of my statements just wouldn't be there

once you

> are found to be searching for the right word in the middle of the

scolding!

> At times I have had an issue with repeating the last word of a

sentence many

> times without the ability of stopping it. I have learned recently

that it

> probably is a oral motor sequencing problem caused by neurological

issues.

> Forgetfulness I can relay a funny (now) story about: when trying

to change

> my postal address at a Post Office one day I had written my new

address on a

> paper to relay to the Postal worker and when asked my present

address (where

> I had been living for quite some time) I blanked out totally. I

had waited

> in line for over 15-20 minutes and literally had to go back

outside to the

> car to ask my husband what our address was, write it down, and

then wait

> once more in line totally embarrassed and then give the info to

the worker.

> The stupidest things can happen when your memory/recall just isn't

there!

> LOL!

> Sorry to be so long. I just wanted to let you know I

understand and

> that you aren't alone!

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org (a

> photo look into Mito)

> Darla: mommy to

> Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder

> issues, some wheelchair use, eye issues, gastric emptying issues...

> Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID,

GERD,

> dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian

> artery, disautonomia, hypertonicity, migraines, possible seizures,

dumping

> syndrome, iron deficiency...

> Luke (17)migraines, sensory issues, & some evidence of SLE's...

> Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3)

> Joey (15 months) with hydrocephalus, dysgenesis of the corpus

callosum,

> encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe

dev. delays,

> left hemiplegia (arm)...

> (15 months) SID, dev. delays, right hemiparesis issues...

>

>

> anyone with similar symptoms?

>

>

> >

> >

> > 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.

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >