Re: Digest Number 3143--symptoms for Donna H

[Guest guest]

I have the digest form of this list but just wanted to say that I have very

mild symptoms of MELAS, basically similiar to yours that have gotten worse

in the last few years. I am now 43 and was diagnosed in 1997 based on an

episode I had where my left side went numb for a few minutes.

I would not have thought melas at all except in 1996 my sister went into a

coma for the 2nd time in 2 years and a doctor near Milwaukee tested her for

MELAS. She subsequently had seizures, went into a coma, was given

experimental DCA, recovered, but eventually lost the battle. My mother died

in 1988 from a seizure. They were both 5 ft and about 105 lbs.

When the incident happened to me I remember her doctor saying if you ever

have numbness on your left side it may be a mini stroke or high lactic acid.

I do have high lactic acid based on a spinal tap done in 1997 but is not as

high in the blood. I take carnitor and qgel.

My main symptoms are periodic tiredness and not being able to focus, the

muscle cramping of the legs at night and even when I am sitting at my desk

at work, and my blood sugar goes up when I do any physical activity but down

when I do mental activity such as working on the computer. The carnitor and

qgel have helped alot.

My 12 year old son was officially diagnosed in January of 2002. Prior to

that he had very bad migraines one year and the next year every couple of

weeks we were in the hospital for very bad, bad constipation. We even went

to the specialists at the university hospital in Madison WI before I thought

to consult the doctor in Milwaukee who diagnosed my sister and me.

Now he takes Carniqgel which is a combination of carnitor and qgel because

he does not like the flavor of the liquid and cannot swallow the big

carnitor pills. Because his symptoms are mild, the 750 mg he gets of the

carnitor are enough but what really helps is the qgel. The only time he

gets even slightly constipated is when he is at a friends and/or forgets to

take the carniqgel for awhile. I also get constipated if I skip a few

days.

One other problem he has is if he gets sick or stays up too late he can

sleep until 3 pm the next day. Nothing you can do will wake him--he even

fell out of bed a few times and that did not wake him.

So, just wanted to share my experiences.

Janet Sample

From: <Mito >

To: <Mito >

Sent: Thursday, April 21, 2005 10:01 PM

Subject: Digest Number 3143

>

>

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: anyone with similar symptoms? to Donna H

>

> 2. Re: Sudafed, allergy meds safe with mito?

>

> 3. Re: Re: Abnormal Mitochondrial? Meagan

>

> 4. Re: Re: Abnormal Mitochondrial?

>

> 5. Re: Digest Number 3142 Anne

> From: SRJsmom572@...

> 6. Re: Digest Number 3142, Kim

> From: SRJsmom572@...

> 7. Re: Re: Abnormal Mitochondrial? Meagan

>

> 8. Re: stuttering question

>

> 9. Re: shaking

>

> 10. home school

>

> 11. Re: Sudafed, allergy meds safe with mito?

>

> 12. Re: Panic,panic,panic

>

> 13. Re: Digest Number 3141, Sharon

>

> 14. Re: Subject: Re: pacemaking-DARLA

>

> 15. menkes disease ASAP please???

>

> 16. Need Info - LONG

>

> 17. Re: Panic,panic,panic

>

> 18. Re: Need Info - LONG

> From: VisibleWorship@...

> 19. Re: Digest Number 3140, need copy of letter fo rmito please

> From: SRJsmom572@...

> 20. Re: Digest Number 3140, cooling vest

> From: SRJsmom572@...

> 21. Re: Digest Number 3140

> From: SRJsmom572@...

> 22. Re: Digest Number 3140, ?Heidi thanks

> From: SRJsmom572@...

> 23. Re: Digest Number 3138, holly rubio

> From: SRJsmom572@...

> 24. Fw: An article from " Family Voices " about Seizure Detection Video

> System

>

> 25. Re: Need Info - LONG Deb

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 1

> Date: Thu, 21 Apr 2005 18:47:41 -0000

>

> Subject: Re: anyone with similar symptoms? to Donna H

>

>

> 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.

>> >

>> >

>> >

>> >

>>

>> __________________________________________________

>>

[Guest guest]

Thanks so much, Janet.

I am so sorry about your sister and your mom, and the symptoms you

and your son are dealing with. I really appreciate you sharing your

experiences with me.

I am going to ask Craig's neurologist about testing for maternally

inherited disorders. Now that his brother and I may be symptomatic

I think we should see if there are any known mutations we have.

I have wondered if Craig's episodes are stroke-like, rather than

just seizures. I hope to get that question answered soon too.

Thanks again.

Donna H.

> >> >

> >> > 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.

> >> >

> >> >

> >> >

> >> >

> >>

> >> __________________________________________________

> >>