Re: Hello I am back from nowhere

[Guest guest]

I'm glad you are finally getting some answers. I know how frustrated

you have been, not knowing.

Hopefully, when things get settled after moving, your symptoms will

improve. Please don't overdo. It doesn't pay in the long run.

laurie

> Hey everybody,

>

> Sorry I haven't posted in awhile, but we finally got internet service running

and things are finally started looking up here. I don't know if I told a lot of

people but Dawn and I moved back up to Northeastern Ohio to be closer to family

because I have been going downhill a lot.

[Guest guest]

---Nice to have you back. Sorry to hear about the deterioration and

the cardiomyopathy. It is good you can live close to your family.

God Bless! Dawn Anich

In , McCombs

wrote:

> Hey everybody,

>

> Sorry I haven't posted in awhile, but we finally got internet

service running and things are finally started looking up here. I

don't know if I told a lot of people but Dawn and I moved back up to

Northeastern Ohio to be closer to family because I have been going

downhill a lot.

>

> We moved to Dover, Ohio which is about an hour and 15 minutes

south of Cleveland.

>

> I finally get my muscle biopsy on October 5th at Cleveland

Clinic. My preliminary blood tests that Dr. Cohen ran didn't point

to any certain disorder but all my carnitines in my blood and urine

were out of whack. Taurine, Proline, Tyrosine, Lysine, 3-

Methyisitidine, Aspartic Acid, Threonine, Serine, Asparagine,

Glutamic Acid, Glutamine, yada yada yada...anyway...I don't know

there were like 22 or 23 flags on the blood and urine tests pointing

to a possible fatty acid metabolism disorder. Whatever that is...I

guess it is a Mito Disorder of some kind from what I have read.

>

> Anyway, I will get the real answers after the biopsy.

>

> I also have had a lot of bouts with chest pain...ie thought I was

having the big one...after having a stress test, and a negative

heart cath, it turns out that the positive echocardiogram in 1996

for an enlarged left atrium was true and the negative one I had

earlier this year was wrong because the nuclear scan from the stress

test and a couple of the EKG's have shown that I do have left atrial

enlargement and my heart is not functioning properly. Bottom line,

I now know that I have cardiomyopathy.

>

> I had a really bad chest pain episode a week and a half ago, which

prompted the 3rd 911 call in 2 weeks, and by the time the Medic got

here I was having a storke like event, and the medic crew thought I

might have been having a focal seizure on top of that because my

body was jerking and shaking sporadically.

>

> Anyway, sorry for the long post, but I needed to vent. I have

missed my friends dearly. My wife is getting better at

understanding but she still doesn't understand like ya'all do.

>

> Well I am off for now. I will talk to you all tomorrow sometime.

We are getting Cable for the first time in 3 years tomorrow and

getting our DSL hooked up too. WOOHOO, I am excited.

>

>

>

>

> In Christ,

>

> McCombs

> 2 Cor 1:3-4

>

> www.mitohope.com

>

>

[Guest guest]

,

great to hear you are back in touch and getting some answers. I am

still on hold waiting for my first appt with an MDA clinic doc in Nov.

God Bless you,

kent

> Hey everybody,

>

> Sorry I haven't posted in awhile, but we finally got internet

service running and things are finally started looking up here. I

don't know if I told a lot of people but Dawn and I moved back up to

Northeastern Ohio to be closer to family because I have been going

downhill a lot.