Husband update

[Guest guest]

Dr. Haas did the seven hour hospital testing on Husband. Results not

in yet but testing and lumbar puncture was very hard on him. DNA

testing shows a 8-kilobase deletion with 10% heteroplamy. In other

words, cronic progressive mm. Dr. H said he is an anomoly as it is

not inherited. What we are dealing with now is extreem fatigue to the

point of being unable to stay awake much at all and his eyesight is

getting worse daily. Eye specialist is at a loss and Dr. H is too.

Has anyone heard of the eyesight loss stopping? Oh, one other thing,

I am having so much difficulty getting him to eat. Other than the

Ensure type drinks any other suggestions?

It appears from what I gather from Haas Husband's case is moving more

quickly than he expected. Symtoms come and go from vomiting daily -

that stopped - then difficulty breating - stopped - now eyes. Is this

the way these things have gone with others?

Thank you all for your replies. I get so much out of the questions

you all ask and the things you share.

[Guest guest]

I'm sorry I don't have any answers for you... only questions.

I don't know what chronic progressive mm is. Can you explain?

As for the eating/drinking issue, I'm not sure what to offer in the

way of suggestions - but wondered if food tastes differently to your

husband. I know when my dad was regressing from parkinson's he had

trouble eating and he said a lot of things tasted too sweet and

didn't appeal to him. He would drink ensure, but not much else.

For a while there we got him to eat by just making up some snacks

that were interesting to him - sometimes something as simple as

cheese and crackers would work. (It was just a matter of trying

various foods to see if he found them appealing enough to eat.)

Maybe someone else here can share their experiences with eye

problems. Please keep us posted on how things are going. I will

keep you in my thoughts and prayers.

Maggie

> Dr. Haas did the seven hour hospital testing on Husband. Results

not

> in yet but testing and lumbar puncture was very hard on him. DNA

> testing shows a 8-kilobase deletion with 10% heteroplamy. In other

> words, cronic progressive mm. Dr. H said he is an anomoly as it is

> not inherited. What we are dealing with now is extreem fatigue to

the

> point of being unable to stay awake much at all and his eyesight

is

> getting worse daily. Eye specialist is at a loss and Dr. H is too.

> Has anyone heard of the eyesight loss stopping? Oh, one other

thing,

> I am having so much difficulty getting him to eat. Other than the

> Ensure type drinks any other suggestions?

>

> It appears from what I gather from Haas Husband's case is moving

more

> quickly than he expected. Symtoms come and go from vomiting daily -

> that stopped - then difficulty breating - stopped - now eyes. Is

this

> the way these things have gone with others?

>

> Thank you all for your replies. I get so much out of the questions

> you all ask and the things you share.

[Guest guest]

Sorry, I just realized that MM is mitochondrial myopathy. I guess I

wasn't used to seeing the abbreviation.

> > Dr. Haas did the seven hour hospital testing on Husband. Results

> not

> > in yet but testing and lumbar puncture was very hard on him. DNA

> > testing shows a 8-kilobase deletion with 10% heteroplamy. In

other

> > words, cronic progressive mm. Dr. H said he is an anomoly as it

is

> > not inherited. What we are dealing with now is extreem fatigue

to

> the

> > point of being unable to stay awake much at all and his eyesight

> is

> > getting worse daily. Eye specialist is at a loss and Dr. H is

too.

> > Has anyone heard of the eyesight loss stopping? Oh, one other

> thing,

> > I am having so much difficulty getting him to eat. Other than

the

> > Ensure type drinks any other suggestions?

> >

> > It appears from what I gather from Haas Husband's case is moving

> more

> > quickly than he expected. Symtoms come and go from vomiting

daily -

>

> > that stopped - then difficulty breating - stopped - now eyes. Is

> this

> > the way these things have gone with others?

> >

> > Thank you all for your replies. I get so much out of the

questions

> > you all ask and the things you share.

[Guest guest]

> Dr. Haas did the seven hour hospital testing on Husband. Results not

> in yet but testing and lumbar puncture was very hard on him. DNA

> testing shows a 8-kilobase deletion with 10% heteroplamy. In other

> words, cronic progressive mm. Dr. H said he is an anomoly as it is

> not inherited. What we are dealing with now is extreem fatigue to the

> point of being unable to stay awake much at all and his eyesight is

> getting worse daily. Eye specialist is at a loss and Dr. H is too.

> Has anyone heard of the eyesight loss stopping? Oh, one other thing,

> I am having so much difficulty getting him to eat. Other than the

> Ensure type drinks any other suggestions?

>

> It appears from what I gather from Haas Husband's case is moving more

> quickly than he expected. Symtoms come and go from vomiting daily -

> that stopped - then difficulty breating - stopped - now eyes. Is this

> the way these things have gone with others?

>

> Thank you all for your replies. I get so much out of the questions

> you all ask and the things you share.

Hi,

My condition, Kearns/Sayre, effects the eyes and eye muscles. My vision is

still relatively good, but I'm supposedly at risk for retinitis pigmentosa.

I'm keeping my fingers crossed on that one. Has your husband seen a

neuro-ophthalmologist? They're the one's that are most familiar with

mito-related eye conditions.

As for symptoms coming and going, mito can be one of those good day/bad days

situations for some people. It seems to be a very unpredictable disease, at

times.

Is he on the mito cocktail of Q10, carnitine, and vitamins? That may help.

It's also important to keep him hydrated, if you can.

B