Re: How important is it to pursue diagnosis

September 17, 2005

As far as continuing to look for a diagnosis, I think it depends on

several things - are you okay with the probable diagnosis (some are

and some aren't), do you need a firm diagnosis to get disability or

needed accommodations and can you get the medical care without one or

in fact with one.

I think it is a very personal dicision for each of us and we all have

different needs. It needs to be what is best for you at this time.

laurie

> Hello, it is me again. I am having more symptoms recently,

> likely due to more home and work stressors.

>

> I have never been formally diagnosed; " sounds like mito "

> from primary care doc, my own research, and McMaster

> university neuromuscular unit saying " you have signs of

> neuromuscular disease, with limb-girdle muscle signs and

> exercise intolerance " .

>

> I have never had a biopsy because the three times i was

> scheduled i was bumped by emergencies, waited all day in

> two cases and was called to cancel in a third.

>

> I have had no real signs in my blood work of lactic acid

> buildup, etc, even after some exercise. Mind you, in all

> cases it appeared the lab had to call the doc for

> clarification for what the blood was being taken for, and i

> have little confidence they acually got it right (three

> times i had bloodwork done for muscle disease specifically,

> and three times it was over two hours of the technicians

> calling around for clearification - once nearly 4 hours --)

>

> I am writing this for a few reasons ...

>

> My vision is bothering me, suddenly, i have days where it

> seems " fogged " or slightly unfocussed. Is this because i

> look at a computer screen all day for work? I have a great

> monitor, i can use a screen magnifier, and i have never had

> this problem before .... what are the symptomos of eye

> probs with mito?

>

> I have exercise intolerance to a huge degree, can no longer

> walk any distances, use a motorized chair for any distance.

> But is it possible i have " something else " that the docs

> aren't finding? I thought i had been tested for

> " everything " ...

>

> Most importantly, SHOULD I CONTINUE TO PURSUE DIAGNOSIS???

> I am sick and tired of the medical game ... had a primary

> care doc say, " why do you need to know? " like i was some

> petulant toddler wanting a sucker and being greedy. I tell

> people i have mito because it seems most likely and because

> that's what my latest doc has said she thinks it is (family

> doc, tho) ... but i know that all resources geared towards

> mito are firmly fixed on the care of the young urgent cases

> and i'm never going to get the time unless i make myself

> very pushy.

>

> Why does it matter that i know? I do know that in Canada, I

> would be able to access the Muscular Dystrophy Association

> support system, and i guess that would be my real

> motivator.

>

> Do i have Mito? Am i just " weird " ? Is it getting worse ..

> am i going to be unable to see the computer screen in a

> couple of years?

>

> Sigh ... So many questions, and the easiest thing is to do

> what i have been doing for the past couple of years ...

> just wait and see.

>

> Thank you for listening, and i await your wisdom ... I have

> learned a ton from this group ...

>

> --

>

> ***********************************************************

> Kelta Vineyard

>

> __________________________________________________________

> Find your next car at http://autos.yahoo.ca

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

September 17, 2005

- I'm going through the same thing right now. Just had my

second muscle biopsy, no report yet. When I was at my primary docs

office to have the stiches removed yesterday we had a long talk

about getting a diagnosis. In the US I could also avail myself of

the resources of the MDA if I had a diagnosis. I'm on Social

Security Disablility, but got it on an incorrect diagnosis. I'm

afraid that when I come up for review I might lose it if I don't

have something concrete. Personally I really want to know. Maybe

there isn't a cure, but I need to know that I did all I could to

find out the cause of this life altering disease. Plus in the

beginning I was told it was all in my head, maybe I need to " prove "

something by having something concrete. I've been going through the

process for 12+ years, it's frustrating and sometimes I wanted to

give up and never go to another doctor or subject myself to another

test, but I have to keep trying. As far as the vision trouble it

sounds just like me, I can read for few minutes, then everything is

blurry, I can't track things across a page. Right at this moment I

can't see what I'm typing. I was an office manager for years, one of

the reasons I applied for disability was because of my vision. I

hope you find answers, Laurie is right though, it's a personal thing.

Marla

September 17, 2005

Ditto what Laurie said. The process can be very, very, very long to

get a diagnosis. Many invasive and non-invasive tests and it can be

an extremely expensive and time-consuming proposition...only to risk

the possibility of never getting a diagnosis, or getting diagnosed

with an incurable disease. It's definately a personal choice whether

you want to persue this or not. For some people, they sleep better at

night if they have a name for their condition / disease. Others

decide that the hassel of discovery is far more stressful than the

disease process. I tend to do a little of both. I persued a

diagnosis, but also made a lot of lifestyle changes ( ie diet,

exercise, rest ) to improve my health. I also have spent a lot of

time educating myself about the disease and that makes the incurable

part a lot more bearable. Good luck and I hope you find peace in

whatever you decide to do.

Bug

September 17, 2005

--- Drotos rdrotos@...> wrote:

> Hello, it is me again. I am having more symptoms

> recently,

> likely due to more home and work stressors.

>

> I have never been formally diagnosed; " sounds like

> mito "

> from primary care doc, my own research, and McMaster

> university neuromuscular unit saying " you have signs

> of

> neuromuscular disease, with limb-girdle muscle signs

> and

> exercise intolerance " .

Have you ever tried the mito cocktail? Did it help?

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

September 18, 2005

Thank you everyone for your thoughts on this ...

I think I need to pursue diagnosis again, sigh. I owe it to

my family to gain whatever help i can, whether it be from

any research on through to whatever the MD Assoc. of Canada

has to offer (advice, whatever).

I worry about the near future, ability-wise. We spent a lot

of money renovating the house (all with disability in mind)

but there is more to do ... I can manoever in the house

using cane etc (even without, on good days) but i worry i

will need to have a ramp entrance. Our bedroom is upstairs,

I will need to address that issue too.

I worry about sucking all the family resources into my

needs, at a time when my children should be paramount. I

feel everything always revolves around me, am I healthy

enough for a family outting or will my children be able to

have friends over if Mum is not well enough.

I have always felt i could deal with stuff as it comes up,

and I know there have been frequent times that I cannot, it

has always been sporadic in the past. I am declining in

ability though, and there just is no getting around the

fact that an ability that has been gone for like 3 years

(walking more than 20 feet without crutches, and not

walking much further at all even with) is just not likely

to come back.

I have lost loved ones in the past and know what grief

feels like, and in a way if feels like this, the loss of

ability. Like i'm grieving. I used to ride horses, and I

dream of it now fairly often. I have in fact wondered if I

should partake of riding for the handicapped, wouldn't that

exorcise my demons? Not like it was, but at least a

strategy I could work on, something I can *do*.

I took a membership at a local hotel pool when i could walk

longer distances with crutches ... now, however, i find

that the stairwell to the pool (it is not accessible) is

too far for me most days. Silly, eh? But no other pool is

close enough nor are they open / useable when i need them

to be.

I have a tough time talking myself into my stretches and

" yoga " in the mornings, they don't make me feel better

anymore and i ache and feel zonked afterwards. I used to

feel alive afterwards, i've been assuming they are bad now

because i'm in a " flare " ... wonder how long i can safely

assume that? I'm giving it a rest for a bit, doing

relaxation and meditation and resting, hoping i'll improve

a bit ...

Thanks again for the forum, sorry for the length of this

posting ...

--

***********************************************************

Kelta Vineyard

__________________________________________________________

Find your next car at http://autos.yahoo.ca

September 18, 2005

We do have to grieve for our losses. Everyone who has been on the list

for awhile has heard me say this. We should let ourselves grieve. I

have found that I can shorten my grieving process (I've had lots of

practice) by planning on something new to do or a new way of doing

something. This has allowed me to move to using more equipment and

ways of doing things.

I hope you can let yourself grieve and move on when you are ready. It

is different for all of us and no one way is the correct one.

Hugs,

laurie

> Thank you everyone for your thoughts on this ...

>

> I think I need to pursue diagnosis again, sigh. I owe it to

> my family to gain whatever help i can, whether it be from

> any research on through to whatever the MD Assoc. of Canada

> has to offer (advice, whatever).

>

> I worry about the near future, ability-wise. We spent a lot

> of money renovating the house (all with disability in mind)

> but there is more to do ... I can manoever in the house

> using cane etc (even without, on good days) but i worry i

> will need to have a ramp entrance. Our bedroom is upstairs,

> I will need to address that issue too.

>

> I worry about sucking all the family resources into my

> needs, at a time when my children should be paramount. I

> feel everything always revolves around me, am I healthy

> enough for a family outting or will my children be able to

> have friends over if Mum is not well enough.

>

> I have always felt i could deal with stuff as it comes up,

> and I know there have been frequent times that I cannot, it

> has always been sporadic in the past. I am declining in

> ability though, and there just is no getting around the

> fact that an ability that has been gone for like 3 years

> (walking more than 20 feet without crutches, and not

> walking much further at all even with) is just not likely

> to come back.

>

> I have lost loved ones in the past and know what grief

> feels like, and in a way if feels like this, the loss of

> ability. Like i'm grieving. I used to ride horses, and I

> dream of it now fairly often. I have in fact wondered if I

> should partake of riding for the handicapped, wouldn't that

> exorcise my demons? Not like it was, but at least a

> strategy I could work on, something I can *do*.

>

> I took a membership at a local hotel pool when i could walk

> longer distances with crutches ... now, however, i find

> that the stairwell to the pool (it is not accessible) is

> too far for me most days. Silly, eh? But no other pool is

> close enough nor are they open / useable when i need them

> to be.

>

> I have a tough time talking myself into my stretches and

> " yoga " in the mornings, they don't make me feel better

> anymore and i ache and feel zonked afterwards. I used to

> feel alive afterwards, i've been assuming they are bad now

> because i'm in a " flare " ... wonder how long i can safely

> assume that? I'm giving it a rest for a bit, doing

> relaxation and meditation and resting, hoping i'll improve

> a bit ...

>

> Thanks again for the forum, sorry for the length of this

> posting ...

>

> --

>

> ***********************************************************

> Kelta Vineyard

>

> __________________________________________________________

> Find your next car at http://autos.yahoo.ca

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

September 19, 2005

I have a little different scenario than others and do not know what really

caused me to get tested either but something told me I should.

My sister was diagnosed in May 1996 after going into a 4 day coma. She went

into a coma in 1994 also. So we knew she had MELAS. My mother died in 1988

under strangely similiar circumstances. I did not really have symptoms that I

could identify at that point. But looking back at my childhood and adult life I

had some " soft " signs. Anyway, I decided to get tested when I had one side go

numb for a few seconds. This was back in 1997.

Still not sure why I decided to get tested. It did let me know though that

there really was some explanation for all my wierd symptoms that I had. In my

sons case it helped with the school paperwork.

So, I know I did not really answer your question but sometimes there is just

this need inside to know.

Janet Sample

RE: Re: How important is it to pursue diagnosis

I understand this, Dolores. It was because my son had symptoms that I kept

looking for answers--or I should say, that was one of the main reasons. I

wanted answers too. By the time he was five, I knew he had whatever I had,

though at that time (1979) no one had even heard of mitochondrial disease.

When he was 9, I got the CPT diagnosis (which was miraculous, given the way

it happened) and within 6 months his diagnosis was confirmed by muscle

biopsy. I kept looking for MORE answers beyond CPT because it became

apparent that there was more than CPT going on, and that second broad mito

defect diagnosis didn't come until1998.

I have always been an active participant in research projects and this again

was because I wanted my son to be able to benefit from knowing as much as

possible about our family biochemistry and how to treat it. We still have

lots of unanswered questions, but I will keep searching and looking and

volunteering. Partly this is because I am by nature a very curious person

and I like to try to puzzle through all these biochemical mysteries. But my

son has always been the primary motivator. I want to leave him all the help

I can find--a good sort of inheritance to pass on, a way to manage the

messed-up biochemical inheritance he got from me.

Cure, no, but treatment, management, understanding, learning, yes!

Take care,

Barbara

> I will continue to keep looking for an answer for the sake of my surviving

Son, for

> my Grandchildren and Great-grandchildren, even though my PCP won't even

> discuss it with me all she will say is, " what makes the difference there

is no cure " .

> The main reason I am going to take that trip to KU is for their sake.

Dolores

>

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

September 20, 2005

Wow.

I'm not sure what i expected when i started this thread,

but I know what I have gotten ... thank every one of you

for responding ...

My pcp has left the area a couple of weeks ago, and the new

doc taking up the practice won't be here until November, so

I shall have to wait until then to re-initiate the process.

One of my reasons for deciding on whether to pursue all

this is that, now that I have a new doc incoming, I will

likely have to start things over again. However, after

hearing all your ideas and posts ... I believe I very much

want to do that. I understand the challenges of getting a

new doc up on what is happening, but also perhaps it is a

new opportunity of starting fresh with a new perspective.

The doc I had was firmly of the " we have no cure so why

spend the money on this " school, and frankly (since health

care is public up here in Canada) I was feeling guilty for

asking for all those resources to be " wasted " on me.

Anyway, onward and upward. Thanks for all the " restless

leg " info too, everything i read here is like " oh yes, i

know that " and " wow, that happens to me too " ... just so

nice to feel part of a large group of people you can trust,

and to not feel alone

--

***********************************************************

Kelta Vineyard

__________________________________________________________

Find your next car at http://autos.yahoo.ca

September 20, 2005

,

pursuing a dignosis is important for me to possibly qualify for help

from the MDA which our insurance is balking at covering. in short, no

MDs in our HMO understand enough about neuromuscular diseases to make

a diagnosis, but the ins co is dragging its feet about an out of

system referral. i also assume (without experience) that having a

diagnosis will make it easier to qualify for financial help with ADA

renovations. We finally moved our bedroom downstairs. i am looking

into ramps and chairs. and yes, i have and still am grieving losses.

yesterday i finally threw away old papers from when i was a soccer

referee and cried. hang in there. i said a prayer for you.

kent

> Thank you everyone for your thoughts on this ...

>

> I think I need to pursue diagnosis again, sigh.

September 20, 2005

Sounds like your former PCP is a relative of my current PCP as her favorite

saying about Mito is, " why worry about it there's no cure anyway " and when I

kept asking her about my being hoarse all the time, It's not going to kill you

soo why worry about it " . Fortunately I had to see an ARNP both times I had

pneumonia and then went back to her for a follow-up and she was very concerned

about my hoarseness and referred me to the ENT that I saw last friday. I guess

it takes all kinds?? Take care, Good Luck and God Bless. Dolores

Drotos rdrotos@...> wrote:Wow.

I'm not sure what i expected when i started this thread,

but I know what I have gotten ... thank every one of you

for responding ...

My pcp has left the area a couple of weeks ago, and the new

doc taking up the practice won't be here until November, so

I shall have to wait until then to re-initiate the process.

One of my reasons for deciding on whether to pursue all

this is that, now that I have a new doc incoming, I will

likely have to start things over again. However, after

hearing all your ideas and posts ... I believe I very much

want to do that. I understand the challenges of getting a

new doc up on what is happening, but also perhaps it is a

new opportunity of starting fresh with a new perspective.

The doc I had was firmly of the " we have no cure so why

spend the money on this " school, and frankly (since health

care is public up here in Canada) I was feeling guilty for

asking for all those resources to be " wasted " on me.

Anyway, onward and upward. Thanks for all the " restless

leg " info too, everything i read here is like " oh yes, i

know that " and " wow, that happens to me too " ... just so

nice to feel part of a large group of people you can trust,

and to not feel alone

--

***********************************************************

Kelta Vineyard

__________________________________________________________

Find your next car at http://autos.yahoo.ca

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

September 20, 2005

I'm glad you are finding the group helpful.

laurie

> Wow.

>

> I'm not sure what i expected when i started this thread,

> but I know what I have gotten ... thank every one of you

> for responding ...

>

> My pcp has left the area a couple of weeks ago, and the new

> doc taking up the practice won't be here until November, so

> I shall have to wait until then to re-initiate the process.

> One of my reasons for deciding on whether to pursue all

> this is that, now that I have a new doc incoming, I will

> likely have to start things over again. However, after

> hearing all your ideas and posts ... I believe I very much

> want to do that. I understand the challenges of getting a

> new doc up on what is happening, but also perhaps it is a

> new opportunity of starting fresh with a new perspective.

> The doc I had was firmly of the " we have no cure so why

> spend the money on this " school, and frankly (since health

> care is public up here in Canada) I was feeling guilty for

> asking for all those resources to be " wasted " on me.

>

> Anyway, onward and upward. Thanks for all the " restless

> leg " info too, everything i read here is like " oh yes, i

> know that " and " wow, that happens to me too " ... just so

> nice to feel part of a large group of people you can trust,

> and to not feel alone

>

> --

>

> ***********************************************************

> Kelta Vineyard

>

> __________________________________________________________

> Find your next car at http://autos.yahoo.ca

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

September 20, 2005