welcome amy!- long

[Guest guest]

Amy,

Just wanted to welcome you to the group. Unfortunately you and your husband

have come into the relm of unknowing/unhelpful and so on drs. We have all been

down that route, some longer than others. You can read the longer version of

my story in my recent post to if you havent read it yet. Basically though

I've had symptoms all my life though they were very mild till my early to mid

teens- then they became slightly progressively but still fairly mild. Then

during my mid-teens I began to have alot of GI and neuro probs. These just

became

more progressive along with my other systemic probs and from age 19 on I

seemed to go downhill alot faster and develop many new symptoms- I'm 24 now.

They

just started to look into mito the past 2 yrs. I went through alot of drs and

alot of misdiagnosises. Why dont you share 's story so we can possibly

help you more in you journey for drs and also get to know you guys. Do yall

have kids? That had to be hard on him to be active duty and to get sick but I

know that has happened to a few on this list. I hate he is having such a prob

getting a muscle biopsy but I am sure he eventually will find a dr that will

support the need for it and get the insurance to cover some of it. I JUST had

one

in december finally (with Dr. Shoffner). I am hoping to get the results in

the next few wks. Have they done any other tests that show abnormal findings?

I've had quite a few abnormal tests like EEGs, EMGs, nerve conduction tests,

amino acids being high and low, lactic acid being high once, other abnormal

labs,

, positive tilt table test (for dysautonomia), abnormal tests on my GI tract,

bladder, and lungs, etc. Anyways....have you guys been to Duke? One of my

local neuros suggested there (I'm from VA and havent had much luck with DC drs

so

they suggested Duke). Well, I looked into the drs there and found a few kinda

interesting. There is a Dr. Marvin Rozear- he's a neurologist mainly

interested in neurogenetics (this is the same thing Dr. Shoffner is into). I'm

not

sure if he is at the MDA clinic there but the head of the MDA clinic is Dr.

Bedlack, and you can make appts for both of them at the same number- which is

. The only reason I dont think Dr. Bedlack is a good idea is it

seems

like he is mostly interested in ALS and other motor neuron syndromes. I had

went to the MDA clinic in DC not knowing that the dr I was seeing there was also

mainly interested in ALS and he didnt spend but 15 mins with me and only

ordered a lactate/pyruvate test and acted like nothing was wrong with me. Lets

just

say I was very unpleased. But the Dr. at Duke, Dr. Rozear, he seems like he

might know something about mito since he is into neurogenetics and that is

basiclally what mito is. Then there was one other dr that caught my eye- Dr. J.

Vance. He also is a neurologist but he is into inherited neurological

conditions. I'm not sure what the difference is there, but I am assuming there

is one.

His number is . Hopefully one of them can help- maybe if Dr. Rozear

isnt taking new patients you can check out the other one- or if neither of

them is promising maybe their office will have suggestions? Or if both those drs

are accepting patients, you might want to ask their office staff if there is

a way to contact them or any way to find out their knowledge of mito and

related disorders and see which one might be better to see. I know there is also

a

genetics dept there too but cant come up with the drs that work there, just

the neurologists and other departments. I also think that once you find a mito

specialists or specialist that deals with his case, if its close enough, have

his PCP (internist) be at the same hospital so they all can work together. Then

you could get other specialists there too. Maybe with the internist you could

find one that deals with people that are chronically ill (thats who I see,

though hes never seen anyone with mito till me, he knew about it at least). Or

as someone else mentioned, might wanna look into geriatrics, they might know

more too. I know at Duke they also are affiliated with the VA hospital so that

would be nice too. I know of a few other specialists there too cuz of when I

researched it, but I will wait and see what you say are his particular symptoms

and what drs he needs to see before I give any more info. I know I've given

alot already and I hope I've helped some way. Also, about the mito cocktail-

seems everyone else has put alot of input on it already. It seems it varies from

person to person if it helps them or not and what they take specifically. For

me, right now- I just take l-carntine, CoQ10, Vit E (all are together in one

pill), then I also take Vit C, B Complex 100 and Riboflavin (B2- my dr feels

that riboflavin is the best of all the B's for mito). I also take other meds for

symptoms of course and supplement some of my electrolytes. Puritan's Pride (

www.puritan.com ) is one of the best places to get vits and supplements. But

it definitely is best to talk with a dr before starting on alot of these

things. I do hope you can find him a good dr soon- hopefully some of the ones

I've

listed will help and if you want some from other specialties, I might have some

to mention there too, just ask. Feel free to email me privately if that would

be easier for some reason. I have been very inactive in this group lately but

am hoping to become alot more active again! I'm glad to see new people coming

in- hate that we all are dealing with mito in some way, but glad we have each

other at least. Anyways, welcome again and hope to get to know you and your

husband more.

Take care,

Adrienne