Adam

[Guest guest]

Adam,

I just read your post about your probs with drs. I can so understand this.

I've had symptoms of mito since around 10 months of age but it was very mild and

very slow in progression until I was in my mid-to-late teens. My mom did have

me see some specialists when i was younger but they just treated the

individual issues until I was 18. That is when everything started to go alot

worse and

alot more progressive. I got alot of misdiagnosises and mito wasnt suggested

as a serious diagnosis till I was 22. I saw many drs from then on that just

did the basic labs, few for mito and when they came back normal or unspecific,

they would dismiss mito, but the more I read up on it myself, the more I was

sure I had it, especially after I started having stroke like episodes, multiple

types of seizures, hearing loss and various neuromuscular issues getting worse

from age 19 on. I finally decided to look for the specialists myself- went to

the Cleveland clinic and they did a workup only things were the unspecific

abnormal amino acids and everything else was normal other than my potassium and

few other electrolytes being low which I already knew. They concluded that

this was due to my GI disorders. Again, after seeing a mito specialist and not

getting an answer- i felt I was all alone again in my search and help. It wasnt

until last yr when I wrote Dr. Korson and asked if he knew of anyone in my

area- he suggested someone and I sent them my records from cleveland and they

then recommended Dr. Greene. I saw her and she finally seemed to believe I had

mito and was agressive about it- she ordered the muscle biopsy and had me see

Dr. Shoffner. I saw him finally in dec, he did alot of work including the biopsy

and then in may this year finally got the report that I have complex I, III,

IV defects and possible II also. Now I've got alot of drs on my side- but this

has been a 24 year journey- last 5 being especially hard. I just wanted to

let you know- that though this story is long and frustrating, i did have to

advocate for myself and finally got what i needed- a diagnosis, treatment,

support, etc. I'm not sure if you have seen Dr. Korson, but it seems so many are

happy with him and if you are in the boston area, hes definitely the person to

see. Then if he ordered the muscle biopsy- i would suggest getting it done

either

at Columbia preb or atlanta if thats not to far a trip. please keep me

updated and i hope my story has encouraged you to keep on going- we are all here

for

you, remember.

take care,

Adrienne