Re: Re: Q10 / Mito

[Guest guest]

Amy

You might want to contact the national office of MDA and have them look into

finding you an MDA doc who is at least familiar with mito and willing to

learn. I had to go out of my area to a clinic further away. My local area

clinic doc wasn't interested. My current MDA neuro knew almost nothing about

mito, but was willing to learn and has become very knowledgable and is even

diagnosing people with mito. I also couldn't find a primary care doctor and

finally found a doctor who specializes in geriatric patients. Many of our

issues are like those seen in older people, because aging is due to

mitochondrial damage. She is learning, but relies on my MDA doc and Dr.

Cohen (I see him once a year). At least she can treat the normal kinds of

things and reads the info I give her.

I needed to take a break from the hunt to get a diagnosis and treatment. I

was then ready to search again. Good luck and be comfortable with the place

you are at right now. I'll be thinking about both of you.

laurie

>

> Reply-To:

> Date: Thu, 1 Apr 2004 23:19:21 -0500

> To: >

> Subject: Re: Q10 / Mito

>

> I want to thank all of you for the Q10 info and advice. My husband has been

> sick for 4 years, he's 28 years old. He was active duty military when he got

> sick. We have been to see so many doctors it's a joke. I know this is the

> same for most of you. Unfortunately, our experience with MDA has not been

> particularly helpful. We live in North Carolina, and have been to see Dr.

> and Dr. Hall, the 2 MDA DRs at UNC Chapel Hill Hospital on numerous

> occassions. To make a painful story short, they have only shrugged their

> shoulders and told my husband they do not know anything about his condition

> and they can offer nothing to help him. We received a fair amount of help

> from the Genetics dept at UNC, and we were on the path for a fresh biopsy with

> Dr. Shoffner for about 18 months, but have reached an impass with our medical

> insurance in paying for the fresh biopsy. We were told that there was a

> possibility that MDA would pick up the difference, but Dr. Hall or

> would have to write a letter stating the fresh biopsy was necessary. After

> nearly 6 months of weekly phone calls and messages to them, I gave up. I hate

> to quit, but somehow feel like maybe it isn't supposed to happen for him right

> now. We live life day to day trying to manage the disease and symptoms as

> they come. The town we live in is Fayetteville and we have not been able to

> find a GP who will touch him with a 10 foot pole. He saw a local neurologist

> briefly, that everyone recommended, but that proved to be another dead end -

> after running several tests he lost interest and said there was nothing he

> could do - unless we wanted to try chemo therapy... (I don't think so!). I

> pray that someday we will find a doctor who can offer some help. I know you

> know how frustrating this is. At this point we feel lucky to have a doctor

> who is willing to keep filling the prescriptions to manage his p ain. If

> anyone knows a doctor in this area, I would love to know who to go to. The

> genetics doctors at UNC were the best we saw - but told us quite plainly " we

> don't have answers for you, there are no doctors in this hospital or

> surrounding area who treat this kind of condition - and you should understand

> that the reason most doctors give you the run around is that they don't really

> want to see you - they don't know how to treat your condition " I appreciate

> their honesty. That was also the beginning of our giving up in looking for

> answers, but I don't have to tell you how frustrating it is to go from doctor

> to doctor...

>

> thanks for listening,

>

> Amy

> 's wife

>

>

[Guest guest]

Amy,

I cannot help you with the doctor issue since we live in Wisconsin, but we

have TRICARE which I assume you may be on. My husband is a retiree but

because he broke his back while in the marines back in 1976. So we pay for

25% of our medicines.

If you are on TRICARE, I was able to get them to cover the Qgel--actually

they have paid for the Carniqgel since it has orphan drug status. They pay

for the carnitor at $9 per month. You can't get preapproval for the

Qgel--the claims sent it back and told me to send in a receipt. I also got

denied even after I got approval and had to send a copy of the approval. If

you want more info on the exact military paperwork I got back let me know.

Also, let me know if you need help getting tests and stuff paid for thru

TRICARE--in 1997 when I went thru testing we had a real problem with wrong

coding. We paid for my son's diagnostic test on our own in November.

Anyway, welcome. The doctor who diagnosed my sister, then me and more

recently my son is out of Milwaukee. Another person on another list went to

see him and was surprised how thorough he is. She mentioned that 11 years

ago he diagnosed her nephew with a very rare disease also. He studied out

in California--I do not know where he is from originally. A little far to

travel but it you wanted to go to Chicago for any reason it is about 2 1/2

hours from Great Lakes Naval Base.

Janet Sample

Re: Q10 / Mito

> I want to thank all of you for the Q10 info and advice. My husband has

been sick for 4 years, he's 28 years old. He was active duty military when

he got sick. We have been to see so many doctors it's a joke. I know this

is the same for most of you. Unfortunately, our experience with MDA has not

been particularly helpful. We live in North Carolina, and have been to see

Dr. and Dr. Hall, the 2 MDA DRs at UNC Chapel Hill Hospital on

numerous occassions. To make a painful story short, they have only shrugged

their shoulders and told my husband they do not know anything about his

condition and they can offer nothing to help him. We received a fair amount

of help from the Genetics dept at UNC, and we were on the path for a fresh

biopsy with Dr. Shoffner for about 18 months, but have reached an impass

with our medical insurance in paying for the fresh biopsy. We were told

that there was a possibility that MDA would pick up the difference, but Dr.

Hall or woul!

> d have to write a letter stating the fresh biopsy was necessary. After

nearly 6 months of weekly phone calls and messages to them, I gave up. I

hate to quit, but somehow feel like maybe it isn't supposed to happen for

him right now. We live life day to day trying to manage the disease and

symptoms as they come. The town we live in is Fayetteville and we have not

been able to find a GP who will touch him with a 10 foot pole. He saw a

local neurologist briefly, that everyone recommended, but that proved to be

another dead end - after running several tests he lost interest and said

there was nothing he could do - unless we wanted to try chemo therapy... (I

don't think so!). I pray that someday we will find a doctor who can offer

some help. I know you know how frustrating this is. At this point we feel

lucky to have a doctor who is willing to keep filling the prescriptions to

manage his pain. If anyone knows a doctor in this area, I would love to know

who to go to. The!

> genetics doctors at UNC were the best we saw - but told us quite plai

> nly " we don't have answers for you, there are no doctors in this hospital

or surrounding area who treat this kind of condition - and you should

understand that the reason most doctors give you the run around is that they

don't really want to see you - they don't know how to treat your condition "

I appreciate their honesty. That was also the beginning of our giving up in

looking for answers, but I don't have to tell you how frustrating it is to

go from doctor to doctor...

>

> thanks for listening,

>

> Amy

> 's wife

>

>