Re: All over body pain/

[Guest guest]

Ann,

the doctor I see in buffalo is Julain L Ambrus at Buffalo General Hosp.

Rheumatology clinic. he does all this crazy testing with how the cells work. He

is a great Doctor and we are luck we have a doctor like him here. I tryed

Massage Therapy too and it works ok but I have to go like 2x a week at lease

for it to work well. where do u live in PA?

peetie peetie@...> wrote:

Hi ,

Sorry to hear that you have all over body pain. I can totally relate to that.

I have always had all over body pain, long before I was diagnosed with

Mitochondrial disease.

I live in Pennsylvania. I was wondering who diagnosed you with Mito? Who is

your Mito doctor? Is your Mito doctor prescribing your pain medication or do

you see a Pain Management Doctor?

Like Laurie said she takes Lamictal(an anticonvulsant) for her myoclonus but

it also helps control her pain. I for one used Lamictal too for myoclonus, but

it didn't help control any of my pain.

I would say that if the Oxycontin is helping to control your pain than by all

means stick with it. But if you are having break-thru pain ask your doctor

about putting you on something else. There is a wide selection of pain

medication out there that is helpful.

No one should have to go through life in pain.

Sorry you have Mito but I am glad you found this great group. We are a great

group of people who share our experiences and are here to answer questions, and

help in any way we can. There are a lot of knowledgeable people on this list.

So if you have anymore questions, just ask!!

Hugs,

Ann-Marie

Cich wrote:

hello I was tested two years ago for Mito Myopathy. I am 29yo man from Buffalo

NY and I am on Oxycontin

40 mg 3 x a day for the pain. is anyone on pain killers for to treat the

pain? I have pain all over my body and there is not alot to treat it with it

so far spread of the body.

[Guest guest]

Hi ,

I am glad you have a doctor that is working hard for you. What tests did he do

in order to diagnose you

with Mitocondrial Myopathy? Did you ever have a muscle biopsy done? I am also

very interested

in what testing he does with how the cells work.

I see a team of many different doctors. Each one has their own Specialty. The

good thing is that

they all communicate with each other (and me) either thru email or phone calls.

It took me a long time

to find the doctors I wanted on my team.

I would suggest that if you don't have a Mito doctor that you might think about

finding one. Most

people on this list have a Mito doctor. And also have a good PCP or internal

medicine doctor that

can see you on a more regular basis, and help to manage your disease. As you

will find most Mito

doctors are very very busy and have limited time, so we usually see our Mito

docs every 4 to 6 months.

check out the MDA website at: www.mda.org

and the United Mitochondrial Disease Foundation at: www.umdf.org

I live in Northeastern Pennsylvania. An hour and a half away from New York City

and 2 hours away

from Philadelphia.

Hugs,

Ann-Marie

Re: All over body pain/

Ann,

the doctor I see in buffalo is Julain L Ambrus at Buffalo General Hosp.

Rheumatology clinic. he does all this crazy testing with how the cells work. He

is a great Doctor and we are luck we have a doctor like him here. I tryed

Massage Therapy too and it works ok but I have to go like 2x a week at lease

for it to work well. where do u live in PA?

peetie peetie@...> wrote:

Hi ,

Sorry to hear that you have all over body pain. I can totally relate to

that.

I have always had all over body pain, long before I was diagnosed with

Mitochondrial disease.

I live in Pennsylvania. I was wondering who diagnosed you with Mito? Who is

your Mito doctor? Is your Mito doctor prescribing your pain medication or do

you see a Pain Management Doctor?

Like Laurie said she takes Lamictal(an anticonvulsant) for her myoclonus

but it also helps control her pain. I for one used Lamictal too for myoclonus,

but it didn't help control any of my pain.

I would say that if the Oxycontin is helping to control your pain than by

all means stick with it. But if you are having break-thru pain ask your doctor

about putting you on something else. There is a wide selection of pain

medication out there that is helpful.

No one should have to go through life in pain.

Sorry you have Mito but I am glad you found this great group. We are a

great group of people who share our experiences and are here to answer

questions, and help in any way we can. There are a lot of knowledgeable people

on this list.

So if you have anymore questions, just ask!!

Hugs,

Ann-Marie

Cich wrote:

hello I was tested two years ago for Mito Myopathy. I am 29yo man from

Buffalo NY and I am on Oxycontin

40 mg 3 x a day for the pain. is anyone on pain killers for to treat the

pain? I have pain all over my body and there is not alot to treat it with it

so far spread of the body.