Anita

[Guest guest]

Anita,

Just wanted to say that I'm so glad you've finally gotten your diagnosis-

even if its tentative- sounds like a sure thing to me- I know how that long road

is for the diagnosis and I just got my definite dx just last month as you

know. I also basically diagnosed myself before anyone else really believed I had

mito. Who is the dr that you saw that finally determined this? she sounds good,

would like to know where she is. I hope you look into Dr. Levy still and if

you arent happy with your current mito dr (which you seem to be) dr gropman is

excellent and then Dr. Greene is moving up to baltimore at UMD, shes wonderful

too and really into research so she might know more about PDH- dr gropman may

also- she works PT at NIH as you know. I also wanted to make a comment about

lymes disease- I know you have it and ive said how my rheumatologist thought

that I had it. She was sure that I had some sort of rheumatological prob that

caused my primary disorder (she didnt think i had mito but thought it was

something else such as lupus or mixed connective tissue disease since i tested

positive for them). But she seemed to think that i had had lymes possibly passed

on from my mom in utero and that since ive had it for so long- normal blood

work didnt show it- she wanted some sort of extensive urine test to show it but

i

didnt do it because my insurance didnt cover it. She felt that I had lyme

disease all my life then the lupus or MCTD developed when I was in my mid teens

and thats when I got worse. But now some of my other drs have suggested that of

course it is mito that I was born with and was very slow in progression and

that in my mid-late teens when it got alot worse and more progressive that a

secondary illness caused this- they believe its either an autoimmune disorder

(MCTD) or a chronic infection (like lyme or possibly a form of strep). I was

just thinking maybe your lyme like you mentioned might have a role in how yours

has progressed too? Just thought I would mention that since it seemed kinda

similar to your situation. Also- I know Laurie gave you the some codes but the

one I have is different my drs use 359.8 which is supposively the one for

mitochondrial myopathy/encephalomyopathy but also is for other congenital

myopathies- just it needs to be specified what the disorder is also. Anyways-

hope that

helps- again, am glad that you finally got your dx supported by a dr. Its been

a long road i know!

take care,

Adrienne