Re: mitochondrial myopathy

[Guest guest]

Welcome and Mike. Yes.. This is what most of us are diagnosed

with. We are here to try to help so please feel free to ask your

questions.

Alice

> My husband is 55 and has been diagnosed with mitochondrial

myopathy.

> I was wondering if anyone has this type of md, or experiencing the

> same effects? It would be so helpful to be able to talk to someone

> about this,, along with blood sugar levels and cholesterol levels,

he

> seems to be getting weaker as time goes on. Thanks! and Mike

[Guest guest]

Yes

My husband has the same thing your husband has and is having the same

symptoms

Hugs Jan

Mitochondrial Myopathy

> My husband is 55 and has been diagnosed with mitochondrial myopathy.

> I was wondering if anyone has this type of md, or experiencing the

> same effects? It would be so helpful to be able to talk to someone

> about this,, along with blood sugar levels and cholesterol levels, he

> seems to be getting weaker as time goes on. Thanks! and Mike

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

I absolutely agree Drs do not like it when I bring some thing up from the

internet or chats even His mito Dr doesn't seem to be very happy with it.

But with his mito Dr I e-Mail him so we don't have to go in since we only

have permission to see him 3 times and we have already seen him once ( he is

a pediatric mito Dr)

Hugs Jan

mitochondrial myopathy

> A couple weeks ago Mike went for a second opinion and saw a new

> neurologist at West Va University Hospital. He had a good physical,

> and medical history done. He took the special blood test again,and is

> now scheduled for an EMG and muscle biopsy in October.His meds for

> the diabetes has stopped working and he has been placed back on

> insulin. We are hoping that a new more complete diagnosis is found so

> we know what we are dealing with.It seems that the only direction the

> doctors give us is to treat the symptoms or side effects and learn

> how to live and adjust to this disease.Mike has the very strong

> feeling the doctors do not care for chat rooms or chat help, but

> where can you get better advice or help other than from people who

> are experiencing the same things? Will keep an update posted as

> things get completed and we find out more.Thanks for all the good

> words of wisdom and hope we read in the posted messages.

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Here is a thought, when you copy info from the net also

copy the reference material location and the Dr. that

wrote it

make it bullet proof, I showed my Nuro Dr something

about about a new form of MD that was found, myotonic

dystrophy 3 or DM3 and she had not seen this before,

and thanked me for it.

markb

--- Jan jan777@...> wrote:

>

> I absolutely agree Drs do not like it when I bring

> some thing up from the

> internet or chats even His mito Dr doesn't seem to be

> very happy with it.

> But with his mito Dr I e-Mail him so we don't have to

> go in since we only

> have permission to see him 3 times and we have

> already seen him once ( he is

> a pediatric mito Dr)

>

> Hugs Jan

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