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Kathleen, I have always had anxiety attacks... don't know if they are RP

realted or not. At least I think that's what they are. LOL When I up my pred

it usually takes a few days to completely kick in. I see some results

immediately and then in a few days the flare is totally gone. I usually

don't wait .....as soon as I even think a flare is coming I up my pred..(I

have my doctors okay to do this on my own). Guess I haven't been much help

huh? LOL

hugs

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Kathleen, I have always had anxiety attacks... don't know if they are RP

realted or not. At least I think that's what they are. LOL When I up my pred

it usually takes a few days to completely kick in. I see some results

immediately and then in a few days the flare is totally gone. I usually

don't wait .....as soon as I even think a flare is coming I up my pred..(I

have my doctors okay to do this on my own). Guess I haven't been much help

huh? LOL

hugs

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,

Thanks! I am starting to feel much

Re: Kathleen

> Kathleen, I have always had anxiety attacks... don't know if they are RP

> realted or not. At least I think that's what they are. LOL When I up my

pred

> it usually takes a few days to completely kick in. I see some results

> immediately and then in a few days the flare is totally gone. I usually

> don't wait .....as soon as I even think a flare is coming I up my pred..(I

> have my doctors okay to do this on my own). Guess I haven't been much help

> huh? LOL

>

> hugs

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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,

Thanks! I am starting to feel much

Re: Kathleen

> Kathleen, I have always had anxiety attacks... don't know if they are RP

> realted or not. At least I think that's what they are. LOL When I up my

pred

> it usually takes a few days to completely kick in. I see some results

> immediately and then in a few days the flare is totally gone. I usually

> don't wait .....as soon as I even think a flare is coming I up my pred..(I

> have my doctors okay to do this on my own). Guess I haven't been much help

> huh? LOL

>

> hugs

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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,

Thanks! I am starting to feel much better today. The first day I upped the

pred I felt a little better, today very much better. I was worried I would

have to go higher... Sorry you have anxiety attacks too. They really

stink. I think that half the time they get started because I am afraid of

the throat complications and when my throat starts to hurt -- bam, let's

throw in a panic attack for fun! Anyway, thanks for the reply and I hope

you have a lovely weekend.

Kathleen

Re: Kathleen

> Kathleen, I have always had anxiety attacks... don't know if they are RP

> realted or not. At least I think that's what they are. LOL When I up my

pred

> it usually takes a few days to completely kick in. I see some results

> immediately and then in a few days the flare is totally gone. I usually

> don't wait .....as soon as I even think a flare is coming I up my pred..(I

> have my doctors okay to do this on my own). Guess I haven't been much help

> huh? LOL

>

> hugs

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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,

Thanks! I am starting to feel much better today. The first day I upped the

pred I felt a little better, today very much better. I was worried I would

have to go higher... Sorry you have anxiety attacks too. They really

stink. I think that half the time they get started because I am afraid of

the throat complications and when my throat starts to hurt -- bam, let's

throw in a panic attack for fun! Anyway, thanks for the reply and I hope

you have a lovely weekend.

Kathleen

Re: Kathleen

> Kathleen, I have always had anxiety attacks... don't know if they are RP

> realted or not. At least I think that's what they are. LOL When I up my

pred

> it usually takes a few days to completely kick in. I see some results

> immediately and then in a few days the flare is totally gone. I usually

> don't wait .....as soon as I even think a flare is coming I up my pred..(I

> have my doctors okay to do this on my own). Guess I haven't been much help

> huh? LOL

>

> hugs

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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  • 4 years later...

Dear Kathleen,

Freaking out at first telling of a mito diagnosis is normal. This is

followed by a depression. For me it lasted about a year. Then there is the

guilt

associated with our children. A really rough one. Eventually comes an

acceptance. Be patient with yourself. You are going through a modified grief

process.

As for travel, I also live in the Northern California area. I travel two

and a half to three hours, depending on traffic, to Palo Alto Medical Clinic

adjacent to Stanford for routine care. The distance makes care during an

emergency difficult. I have not found a solution to that problem. I am

certain

other have a similar problem. It goes with the territory. Just

remember that acceptance comes and enjoy each day for the good things it

brings.

a

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a and Kathleen

I live about 5 hours from Cleveland and my MDA neuro doesn't care for

hospitalized patients, so I am building a local team. I found an

interest who sees geriatric patients. It took me a long time to get in

to see her, but she is slowly learning. I keep telling her that many

of things that could become an emergency are the same as her geriatric

patients, since aging is due to damaging of the mitochondria over

time. This seemed to make her more comfortable. She also knows she has

docs that she can call if need be. She enjoys listening to me explain

things to her, as many of her patients are not real sharp mentally

anymore. As problems arise, she refers me to specialists who are

learning a little bit. I am very thankful to have my mito specialists

in the wings, but decided that I had to establish something locally.

Due to needing surgery on a badly torn rotator cuff and having a local

orthopod, the anesthesiaology department has established a protocol

(again talking with the mito docs ahead of time and doing some

reading) in case I should need emergency surgery locally.

I hope you can establish something that you are comfortable with. It

has given me some peace of mind. I also have my records in a notebook

in a bag near the door. My lifeline will instruct paramedics to take

it with me to the hospital in case of a need - hopefully not.

laurie

> Dear Kathleen,

>

> Freaking out at first telling of a mito diagnosis is normal. This is

> followed by a depression. For me it lasted about a year. Then there is

> the guilt

> associated with our children. A really rough one. Eventually comes an

> acceptance. Be patient with yourself. You are going through a modified

> grief

> process.

>

> As for travel, I also live in the Northern California area. I travel two

> and a half to three hours, depending on traffic, to Palo Alto Medical

> Clinic

> adjacent to Stanford for routine care. The distance makes care during an

> emergency difficult. I have not found a solution to that problem. I am

> certain

> other have a similar problem. It goes with the territory. Just

> remember that acceptance comes and enjoy each day for the good things it

> brings.

>

> a

>

>

>

>

>

>

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