Re: To my fellow friends

[Guest guest]

Due to where we live (2 hrs north of milwaukee WI) I have a general practice

physician who I have seen since 1997. She actually has a very heavy chemistry

background and understands alot about melas and is willing to learn. That I

think is the main key.

I was originally diagnosed via a blood test by the doc who diagnosed my sister

in 1996. She had gone into a 4 day coma for the second time in 2 yrs after

having a seizure. They had moved to a city 1 1/2 miles north of Milwaukee and

someone in her family doc's office suggested that this doc would know what it

was. Funny thing was that when she had the first 4 day coma in 1994 she was in

a hospital where this doc often sees patients.

I see him a couple of times a year when I need a letter written by him for

something. He is great at diagnostics but not very great with admin followup.

He is a genetics, pediatrician, geriatric by trade but has treated quite a few

mito patients in Milwaukee and Chicago.

He also works with and I saw just a couple of times a neurologist at the Medical

college.

I do not feel that you need to have any one type of doctor per say. To me

having my gp who is understanding and doesn't think it is all in my head is the

most important. She was and is willing to learn. When something is out of her

league she says so. Recently she declined to help me with my insulin and

insulin pump after the specialist left their practice saying she did not have

the expertise. She is willing to give referrals.

When I got the diagnosis of melas I fired my current gp and interviewed about 10

others but they were all unwilling to work with me until I found her. We moved

two years ago but luckily only 30 miles away so I still am able to see her.

Janet Sample

To my fellow friends

Hi, I look forward everyday to reading my e-mails from the group. I

learn things and feel the joy when you feel it and share it, and the

pain and sorrow also. As for you Kathleen, I recently have been

diagnosed and I too can't quite seem to adjust, and I am also trying

to keep up the stiff upper lip for the family. I also don't want any

pity from them either. I didn't feel any emotion until the day after

seeing my doc and being told. I have been on an emotional roller

coaster. I don't want to die a horrible death either. Now I also

would like to say, I have read about people with

pacemakers,hypothyroidsm,having MRI done and MDA Docs. MY doc is a

neurologist. Does not specialize in Mito. he has been there for me

many times. I have a close bond with him. But do any of you go to a

neurologist and not a mito specialist or MDA? If so has you doc

helped you? I am currently not on any cocktail, as you all say, I am

not on any supplements either at this point. He is still working on

more answers on this biopsy he had me go and do. He feels I have

Melas. I have numerous health problems, don't know if they were all

related to mito either. Been battling these symptoms for years. I do

have a defibrillator not a pace maker. So I can't go for MRI when I

have these stroke like seizures. Cat scan/s don't show much of

nothing. I have hypthyroidism, on meds for years. I have severe

anemia and always having to take alot of iron. I have graves disease,

sleep apnea, low blood count, occasional blood transfusions.

Constantly fatigued. I could go on and on, but if anyone can tell me

if they have a defibrillator and can't have MRI's, etc. Let me know.

I also wanted to know if you feel it necessary for aperson with miro

to see only MDA specialist or will a reg. neuro be ok? At this point

my doc told me to do nothing, just rest, rest, rest, cause of the

pain and the fatigue etc. Only now my eyes are starting to bother me.

Also my neck has been giving me a run for my money. Any info would

help.

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[Guest guest]

HI, i was 1st seen by a neurologist who's office was 10 minutes from

my home he was knowledgable about mito, he suggested i switch to the

MDA clinic which i did, my specialist there is a neurologist who

specializes in mito. My neurologist is in the city at one of our

major hospitals which is 30 minutes from home, and if theres traffic

it can take a hour to get there, but worth it at times. The MDA

clinic was a better choice for me as the MDA helps with funding and

sometimes for free equipment that i need ie..cane, wheelchair,

scooter, oxygen, physical and occupational therapies ect....my son

is not at a mda clinic but sees a pediatric neurologist/metobolic

specialist,at a major childrens hospital in the city, since he has

more metobolic problems than i have. so what really matters is just

having a doc that is knowledgable about mito. You also mention

stroke like migrains and not being able to have MRI because of

defibullizer, but you can have a spec scan, you should ask your

neurologist about that, most spec scan machines are at major

hospitals that are in the city. I dont know how close you are to a

major city, but its worth the trip when you need answers and help.

Hang in there, and your doc is right about getting plenty of rest,

but you will adjust it takes time to learn what your body can

handle, it took me a few years to learn not to overdo things. But

it was more a pride thing for me i was super-mom super-wife, super

worker, i had to learn to hang up my cape. And hanging that cape up

has been a blessing! hugs, Barb