Re: Q10 / Mito

[Guest guest]

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 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 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