Re: Awesome visit with Dr. Simpson

[Guest guest]

, I am sitting here with a big grin, so pleased you have found

the right help. When I hear stories like yours, I keep thinking of

this quote from Zora Neale Hurston, " There are years that ask

questions and years that answer. " You've had the years with

questions and now it is your turn for some answers.

Take care,

Barbara

> Hey ya'all,

>

> My appointment went well with Dr. Simpson. He is sending me to

Cleveland Clinic for another biopsy. Also he told me to start the

CoQ10 and gave me a different muscle relaxer. He says I probably

have one of the 5 COX deficiencies, leaning towards a 1 or 3.

>

> I also go for a echocardiogram and a sleep study.

>

> I feel really confident now. Got to meet Tonya today also. She

came over to the MDA clinic to meet me and my wife.

>

> We left at around 5 this morning and got back at around 6 tonight.

>

> Thanks for all the support and prayers,

>

>

>

> McCombs

> 2 Cor 1:3-4

>

>

[Guest guest]

Hi ,

So excited to hear that your appt. with Dr. Simpson went so well. What a great

feeling when you know that you have awesome doctors in your corner!! You must be

on cloud 9, and feeling so good.

You said that he is sending you to Cleveland Clinic for another biopsy and to

start to take the CoQ10. Why would he have you start the CoQ10 if you are going

to have another biopsy done? Just asking....

It was great that Tonya was able to find the time to meet you and your wife

today. It is always so nice to meet others who also have this disease or are a

caregiver to someone with the disease.

Well, you certainly have had a busy and exciting day today. Try to rest up and

get some sleep.

Happy for you!! Hugs, Ann-Marie

Awesome visit with Dr. Simpson

Hey ya'all,

My appointment went well with Dr. Simpson. He is sending me to Cleveland

Clinic for another biopsy. Also he told me to start the CoQ10 and gave me a

different muscle relaxer. He says I probably have one of the 5 COX

deficiencies, leaning towards a 1 or 3.

I also go for a echocardiogram and a sleep study.

I feel really confident now. Got to meet Tonya today also. She came over to

the MDA clinic to meet me and my wife.

We left at around 5 this morning and got back at around 6 tonight.

Thanks for all the support and prayers,

McCombs

2 Cor 1:3-4

[Guest guest]

Ann-Marie,

From what I gathered at Dr. Simpson office, I think he is pretty sure that I

have the mito disease. And for me I already know it because it affects me so

bad sometimes. Right now I am sick also and that makes my body go even more

South.

I have little or no energy most of the time. There are days that I am okay but

then 4 or 5 that my body just doesn't cooperate with me. But you know that

because you are going through it.

Anyway, it is going to be a few months before I get into Cleveland Clinic for

the biopsy so he wanted me to start it now to see if it would help me.

My cousin Joni, who has 1 confirmed child, Collin, with mito, and they suspect

that his twin sister has it also, she told me a few weeks ago to try it out

also. It is looking more and more that this is a defect in my family. Joni's

mom (my dad's sister) was diagnose with ALS and she lived for almost 20 years

with it. But it is a concensus that we believe that she was misdiagnosed as ALS

and really had a mito disease. But she passed away last May, so we probably

will never know for sure because Dr. Mendell will not budge on his diagnoses of

her. And my Aunt Janette in Texas, who was Donna's sister has almost identical

symptoms as I do, except she has had seizures.

But Dr. Simpson will help us piece together the puzzle.

Anyway, I am yearning so much for energy because I have trouble with doing

anything like playing with my 6 and 2 year old boys because in 5 minutes I am

exhausted. And then my wife gets upset because she is working and trying to go

to college but she is having trouble with those because she is worried how I am

doing taking care of the boys. And I will be honest, I sometimes just have to

sit them down watching a movie so I can just sleep for 15 or 20 minutes to get a

burst of more energy. I am hoping that we can get me on disability soon so I

can get her into school more so she can get done quicker so that I know she has

a decent job if something does happen to me.

Well my arms are hurting from typing so I am going to get off of here.

I am sorry that I went on and on but I just needed to vent for a minute.

Thanks for your thoughts and prayers and also for everyone else's also.

Ann-Marie peetie@...> wrote:

Hi ,

So excited to hear that your appt. with Dr. Simpson went so well. What a great

feeling when you know that you have awesome doctors in your corner!! You must be

on cloud 9, and feeling so good.

You said that he is sending you to Cleveland Clinic for another biopsy and to

start to take the CoQ10. Why would he have you start the CoQ10 if you are going

to have another biopsy done? Just asking....

It was great that Tonya was able to find the time to meet you and your wife

today. It is always so nice to meet others who also have this disease or are a

caregiver to someone with the disease.

Well, you certainly have had a busy and exciting day today. Try to rest up and

get some sleep.

Happy for you!! Hugs, Ann-Marie

Awesome visit with Dr. Simpson

Hey ya'all,

My appointment went well with Dr. Simpson. He is sending me to Cleveland

Clinic for another biopsy. Also he told me to start the CoQ10 and gave me a

different muscle relaxer. He says I probably have one of the 5 COX

deficiencies, leaning towards a 1 or 3.

I also go for a echocardiogram and a sleep study.

I feel really confident now. Got to meet Tonya today also. She came over to

the MDA clinic to meet me and my wife.

We left at around 5 this morning and got back at around 6 tonight.

Thanks for all the support and prayers,

McCombs

2 Cor 1:3-4

[Guest guest]

I was started on CoQ10 (which didn't end up working for me, we tried

a whole range of dosages) before I had a muscle biopsy, same thing

with Carnitor.

Take care,

RH

> Hi ,

>

> So excited to hear that your appt. with Dr. Simpson went so well.

What a great feeling when you know that you have awesome doctors in

your corner!! You must be on cloud 9, and feeling so good.

>

> You said that he is sending you to Cleveland Clinic for another

biopsy and to start to take the CoQ10. Why would he have you start

the CoQ10 if you are going to have another biopsy done? Just

asking....

>

> It was great that Tonya was able to find the time to meet you and

your wife today. It is always so nice to meet others who also have

this disease or are a caregiver to someone with the disease.

>

> Well, you certainly have had a busy and exciting day today. Try to

rest up and get some sleep.

>

> Happy for you!! Hugs, Ann-Marie

> Awesome visit with Dr. Simpson

>

>

> Hey ya'all,

>

> My appointment went well with Dr. Simpson. He is sending me to

Cleveland Clinic for another biopsy. Also he told me to start the

CoQ10 and gave me a different muscle relaxer. He says I probably

have one of the 5 COX deficiencies, leaning towards a 1 or 3.

>

> I also go for a echocardiogram and a sleep study.

>

> I feel really confident now. Got to meet Tonya today also. She

came over to the MDA clinic to meet me and my wife.

>

> We left at around 5 this morning and got back at around 6 tonight.

>

> Thanks for all the support and prayers,

>

>

>

> McCombs

> 2 Cor 1:3-4

>

>

[Guest guest]

, I'm also one of Dr. Simpson' patients and I agree he is

wonderful. You mentioned that you are trying to get on disability. If

this is Social Security I might have some ideas to help. You can call

me at or email me. Pat K