Here we go!!!!!! Just a little vent

[Guest guest]

Monday after we got our prescription for the cocktail I took it to

the pharmacy.I explained to the pharmacist why I need it etc....You

know how medicaid rejects usually the supplements? well they

approved the Vit E and Vit C but said no way will they cover the

CoQ10!! I'm glad to get 2 of the three covered but I thought I would

have more problems with the 2 that were approved!! Not only does

this disease not make sense but neither does how the insurance

companies operate either!!

So tomorrow I will be on the phone so we can get this going.

Meanwhile I will pay the $25 to get what he needs.

Are all mito's terminal? Or are some of them just controllable with

meds for symptoms and can live with them til they're old and gray?

Am I in denial? or being over obsessive?

thank you all for being there for us newer members and i love how you

are all there for each other. What gifts you are!!!

[Guest guest]

Im impressed you got the vitamins approved!! too bad their the

cheaper ones of the bunch!

I dont think they *know* if all mitos are terminal... they only

really pinned the disease down in the '80's so it doesnt really have

a long track record...

I know in my family there are suspicions that htis was passed from

my grandmother to my mother to me, and my grandmother (in spite of

strokes) lived to be 78, so i would imagine it depends on many many

variables. there are forms of mito that only affect the eyes that

do not affect life span at all... They suspect that I have mito as

well as , and Im currently 23 and relatively healthy (there

have been bumps along the way and i have to be careful, but overall

i live a pretty normal life. and hope to continue doing so for some

time).

i have read that if the heart and brain are affected the prognosis

is a little more bleak but still not necissarily terrible...

Im with you on the denial boat, and i quite like it there.

just seems too healthy to get that sick with this... but then i

look at Suhad, Leanna seemed so fine right up until a few weeks

before she got sick.

I think the best advice is to take every day as a gift, and have as

much fun as you possibly can with it. Pray you get many many more,

but dont dwell on the fact that you may not, or it can drive you

completely nuts.

Were at the point right now that were trying to decide whether or

not to open RESP's for . While i really want to save for his

future, I need to know from our doctor if this is a pipe dream as i

have no intention of squirreling away money he may never need, when

we could use it now to do some fun stuff with him... its a crappy

crappy thing to have to take into consideration, especially given

how healthy he is right now...

Anyways.. im babbling.

I know i didnt really answer anything.. sorry... just thinking out

loud.

Keely (mom to (2-complex 1) and Tyler (10wks-so far healthy)

> Monday after we got our prescription for the cocktail I took it to

> the pharmacy.I explained to the pharmacist why I need it

etc....You

> know how medicaid rejects usually the supplements? well they

> approved the Vit E and Vit C but said no way will they cover the

> CoQ10!! I'm glad to get 2 of the three covered but I thought I

would

> have more problems with the 2 that were approved!! Not only does

> this disease not make sense but neither does how the insurance

> companies operate either!!

> So tomorrow I will be on the phone so we can get this going.

> Meanwhile I will pay the $25 to get what he needs.

>

> Are all mito's terminal? Or are some of them just controllable

with

> meds for symptoms and can live with them til they're old and

gray?

> Am I in denial? or being over obsessive?

>

> thank you all for being there for us newer members and i love how

you

> are all there for each other. What gifts you are!!!

>

>

[Guest guest]

From what I've read thru the UMDF and other sites, I don't think all mito diseases are immediately terminal, but they aren't really cureable either. Obviously, some are a lot worse than others. I do think the supplements help and are a big step in the right direction. I wish we'd known more sooner about my nephew's illness - I feel that earlier intervention might have helped, but maybe that's just wishful thinking.

Best of luck to you!

Cyndy, aunt to Ari, age 2, with Leigh's

karenbrbkr wrote:

Monday after we got our prescription for the cocktail I took it to the pharmacy.I explained to the pharmacist why I need it etc....You know how medicaid rejects usually the supplements? well they approved the Vit E and Vit C but said no way will they cover the CoQ10!! I'm glad to get 2 of the three covered but I thought I would have more problems with the 2 that were approved!! Not only does this disease not make sense but neither does how the insurance companies operate either!!So tomorrow I will be on the phone so we can get this going. Meanwhile I will pay the $25 to get what he needs. Are all mito's terminal? Or are some of them just controllable with meds for symptoms and can live with them til they're old and gray? Am I in denial? or being over obsessive?thank you all for

being there for us newer members and i love how you are all there for each other. What gifts you are!!!Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Keely,

This week has been a roller coaster of emotions for me. I was told is moderately affected with mito but told that the good thing is is that he is 7. So day to day Iremember the good news and occaisionally when I start thinking to much The fear starts to creep in.

I look at my family history and I cringe, ( strokes, heart diseases, haemochromotosis, rhumatoid arthritis, migraines, diabeties, hypoglycemia, altzheimers, cancer, osteoarthritis, I believe there is more but can't remember) I used to think I was going to have it bad when I got old!! Now it's my son. Oh well I don't get to dwell on something with 'what ifs' because that leads me to a lonely place in my head!

slept most of yesterday away and was hard to wake up for school today, well, until his puppy jumped on the bed and started licking him!!! I just don't like it when he sleeps so much. I can't wait to start the COq10 and see if it makes a difference.

I hope your day goes well!

ilikemonstertrucks wrote:

Im impressed you got the vitamins approved!! too bad their the cheaper ones of the bunch! I dont think they *know* if all mitos are terminal... they only really pinned the disease down in the '80's so it doesnt really have a long track record... I know in my family there are suspicions that htis was passed from my grandmother to my mother to me, and my grandmother (in spite of strokes) lived to be 78, so i would imagine it depends on many many variables. there are forms of mito that only affect the eyes that do not affect life span at all... They suspect that I have mito as well as , and Im currently 23 and relatively healthy (there have been bumps along the way and i have to be careful, but overall i live a pretty normal life. and hope to continue doing so for some time). i have read that if the

heart and brain are affected the prognosis is a little more bleak but still not necissarily terrible... Im with you on the denial boat, and i quite like it there. just seems too healthy to get that sick with this... but then i look at Suhad, Leanna seemed so fine right up until a few weeks before she got sick. I think the best advice is to take every day as a gift, and have as much fun as you possibly can with it. Pray you get many many more, but dont dwell on the fact that you may not, or it can drive you completely nuts. Were at the point right now that were trying to decide whether or not to open RESP's for . While i really want to save for his future, I need to know from our doctor if this is a pipe dream as i have no intention of squirreling away money he may never need, when we could use it now to do some fun stuff with him... its a crappy crappy thing to have

to take into consideration, especially given how healthy he is right now... Anyways.. im babbling. I know i didnt really answer anything.. sorry... just thinking out loud. Keely (mom to (2-complex 1) and Tyler (10wks-so far healthy)> Monday after we got our prescription for the cocktail I took it to > the pharmacy.I explained to the pharmacist why I need it etc....You > know how medicaid rejects usually the supplements? well they > approved the Vit E and Vit C but said no way will they cover the > CoQ10!! I'm glad to get 2 of the three covered but I thought I would > have more problems with the 2 that were approved!! Not only does > this disease not make sense but neither does how the insurance > companies operate either!!> So tomorrow I will be on the phone so we can

get this going. > Meanwhile I will pay the $25 to get what he needs. > > Are all mito's terminal? Or are some of them just controllable with > meds for symptoms and can live with them til they're old and gray? > Am I in denial? or being over obsessive?> > thank you all for being there for us newer members and i love how you > are all there for each other. What gifts you are!!!> > Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

I hope your son sees the reaction to Co Q10 as our daughter has. She just actually started back on them, from being off a month or so and oh my goodness there is a difference. It's like someone just woke her up. She is actually getting on my nerves again!!

I don't think they consider all types of mito terminal. Dr. Cohen actually told us that he did not think Grace had a fatal form, as long as all goes well. Obviously he could not make any guarantees but I don't think he would have said it, if he did not mean it. Honestly I just can't let myself think about it, or I'd drive myself crazy.

Best wishes

carrie Get the NEW version of MSN Messenger - it's FREE!

[Guest guest]

were seeing the same thing wiht ! We managed to wean

him up to a full dose of CoQ10 over the past 3 weeks, and its SUCH a

difference! He is SUCH a 2 year old now! lol!! Hes having tantrums

again, but the hyperventilating/panic attack things have stopped, so i

think they were just from rushing him onto a full dose...

but yea day and night on the coq10!

>