mito blood test screwed up somehow

[Guest guest]

Hi all

Last November (four months ago) " my " neuro doc from MGH had his office call

me, to schedule what they called a " mitochondrial myopathy mtDNA "

whole-blood evaluation. After some delays with them not getting back to me,

I was able to determine that this was to be drawn there and sent to Athena

Diagnostics. I looked up this exact test #519 on Athena's web site.

I FINALLY on Friday received from my doc's office the nine-page report. What

I had to go through (from start to end) to get this mailed to me is just an

amusing sidebar in what appears to be a never-ending struggle. ONE highlight

of THIS sidebar: at one point I was in the blood lab at MGH (I had traveled

four hours round trip for this) and they had no record at all of me or the

ordered test. Though it was late in the day, one of my doc's office staff

was finally able to come running down with some paper work, so " all was

well " .

I just found out by reading the report that they actually performed a

" complete CMT " evaluation, test #390. I suspect that this staffer just

scribbled in whatever test it is that they do more often. Or something. I

mean, I DO have peripheral neuropathy, which apparently indicates the CMT

(#390) panel. But in fact I have also SUPPOSEDLY been diagnosed with MSL of

mito cause, and so the mito (#519) panel not only makes far more sense but

is also what they TOLD me they were planning, originally.

This mito test is what I have been holding out hope for, because my SSDI

office is not believing one word of what I report, as " unverifiable "

symptoms (I could be making it all up). And they are having no more luck

actually getting info from my doc, than I have.

BTW my EMG/NC (four painful hours, sort of a mini Abu Grahib) from that day

in mid-Nov. shows considerable sensory damage, etc., consistent with PN and

of course mito/MSL. But SSDI could care less, because they don't even know

what PN is, let alone EMG. Further, my brain MRI from that day is negative.

I tried to tell them to image my NECK also, because that's where huge

lipomas are, not to mention obvious spinal problems that are causing

radiating pains and numbness down my arms. But they had their orders, so

brain MRI is what I got.

There are really no words for my feelings about all this. I try to tell

myself that people have been getting f**ked by one system or another since

the beginning of time, but that's cold comfort. I might be able to do

something, except that I am growing increasingly unable to think straight or

be functional for more than a couple of hours a day (and I have other

priorities, like eating).

Steve D.

[Guest guest]

Steve

I am so sorry you are going through this.

I have had similar problems with Athena. Getting reports back is

almost impossible, even for the ordering doctos office. I am wondering

if your insurance might be part of the problem. The preformed test was

much less expensive than what you were suppose to have.

Have you successfully had an MRI of your lipomas in the past (in any

area)? They ended up doing a fat supression CT scan to look at mine.

It ends up looking life a negative. The lipomas show up white on a

black background.

I know it may be impossible to do, but I would try to get hold of a

copy of the lab order. The lab that drew the blood should have it.

That way you will know if the order was wrong or not. Then you will

need to know what the blood drawing lab ordered - again, they should

have a copy of what was sent with the blood. The last thing you might

want to do is contact your insurance company and see what they were

billed for. Just some suggestions.

laurie

>

> Hi all

>

> Last November (four months ago) " my " neuro doc from MGH had his office call

> me, to schedule what they called a " mitochondrial myopathy mtDNA "

> whole-blood evaluation. After some delays with them not getting back to me,

> I was able to determine that this was to be drawn there and sent to Athena

> Diagnostics. I looked up this exact test #519 on Athena's web site.

>

> I FINALLY on Friday received from my doc's office the nine-page report.

> What

> I had to go through (from start to end) to get this mailed to me is just an

> amusing sidebar in what appears to be a never-ending struggle. ONE

> highlight

> of THIS sidebar: at one point I was in the blood lab at MGH (I had traveled

> four hours round trip for this) and they had no record at all of me or the

> ordered test. Though it was late in the day, one of my doc's office staff

> was finally able to come running down with some paper work, so " all was

> well " .

>

> I just found out by reading the report that they actually performed a

> " complete CMT " evaluation, test #390. I suspect that this staffer just

> scribbled in whatever test it is that they do more often. Or something. I

> mean, I DO have peripheral neuropathy, which apparently indicates the CMT

> (#390) panel. But in fact I have also SUPPOSEDLY been diagnosed with MSL of

> mito cause, and so the mito (#519) panel not only makes far more sense but

> is also what they TOLD me they were planning, originally.

>

> This mito test is what I have been holding out hope for, because my SSDI

> office is not believing one word of what I report, as " unverifiable "

> symptoms (I could be making it all up). And they are having no more luck

> actually getting info from my doc, than I have.

>

> BTW my EMG/NC (four painful hours, sort of a mini Abu Grahib) from that day

> in mid-Nov. shows considerable sensory damage, etc., consistent with PN and

> of course mito/MSL. But SSDI could care less, because they don't even know

> what PN is, let alone EMG. Further, my brain MRI from that day is negative.

> I tried to tell them to image my NECK also, because that's where huge

> lipomas are, not to mention obvious spinal problems that are causing

> radiating pains and numbness down my arms. But they had their orders, so

> brain MRI is what I got.

>

> There are really no words for my feelings about all this. I try to tell

> myself that people have been getting f**ked by one system or another since

> the beginning of time, but that's cold comfort. I might be able to do

> something, except that I am growing increasingly unable to think straight

> or

> be functional for more than a couple of hours a day (and I have other

> priorities, like eating).

>

> Steve D.

>

>

>

> 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.

>

>

[Guest guest]

Steve, I wish I could offer more than sympathy. I have never gone through

SSDI evaluation because I only taught 5 years way back when---not enough

work credits to qualify. From what I hear, it seems that those who are most

successful with these applications have a personal physician who is willing

to go to bat for them, write letters, bang on doors and otherwise squawk.

Patient squawking does not have the same effect, unfortunately. If the MGH

neuro is the same one who is never in town or returns phone calls, I don't

suppose he will turn into a patient advocate overnight. Will his office even

respond to queries about why the tests were switched? I wonder, given what

you've said. If this happened to me, I would call my supernurse who would

immediately alert my doctor who'd get right on the phone and find out where

things got screwed up. Lacking this kind of help, I don't know what I'd do.

Waging battle against the system takes so much energy. I have taken up a few

of these battles in the past and won (eventually) but the cost is high,

emotionally and physically. It sounds like you need something on paper from

a physician to confirm MSL. Would that be a more productive battle for now?

Well,,,,,,,,,,,,just some thoughts. Whatever you do, don't give up. Regroup,

rethink.

Barbara

_____

From: Steve

Sent: Sunday, March 06, 2005 2:44 AM

To:

Subject: mito blood test screwed up somehow

Hi all

Last November (four months ago) " my " neuro doc from MGH had his office call

me, to schedule what they called a " mitochondrial myopathy mtDNA "

whole-blood evaluation. After some delays with them not getting back to me,

I was able to determine that this was to be drawn there and sent to Athena

Diagnostics. I looked up this exact test #519 on Athena's web site.

I FINALLY on Friday received from my doc's office the nine-page report. What

I had to go through (from start to end) to get this mailed to me is just an

amusing sidebar in what appears to be a never-ending struggle. ONE highlight

of THIS sidebar: at one point I was in the blood lab at MGH (I had traveled

four hours round trip for this) and they had no record at all of me or the

ordered test. Though it was late in the day, one of my doc's office staff

was finally able to come running down with some paper work, so " all was

well " .

I just found out by reading the report that they actually performed a

" complete CMT " evaluation, test #390. I suspect that this staffer just

scribbled in whatever test it is that they do more often. Or something. I

mean, I DO have peripheral neuropathy, which apparently indicates the CMT

(#390) panel. But in fact I have also SUPPOSEDLY been diagnosed with MSL of

mito cause, and so the mito (#519) panel not only makes far more sense but

is also what they TOLD me they were planning, originally.

This mito test is what I have been holding out hope for, because my SSDI

office is not believing one word of what I report, as " unverifiable "

symptoms (I could be making it all up). And they are having no more luck

actually getting info from my doc, than I have.

BTW my EMG/NC (four painful hours, sort of a mini Abu Grahib) from that day

in mid-Nov. shows considerable sensory damage, etc., consistent with PN and

of course mito/MSL. But SSDI could care less, because they don't even know

what PN is, let alone EMG. Further, my brain MRI from that day is negative.

I tried to tell them to image my NECK also, because that's where huge

lipomas are, not to mention obvious spinal problems that are causing

radiating pains and numbness down my arms. But they had their orders, so

brain MRI is what I got.

There are really no words for my feelings about all this. I try to tell

myself that people have been getting f**ked by one system or another since

the beginning of time, but that's cold comfort. I might be able to do

something, except that I am growing increasingly unable to think straight or

be functional for more than a couple of hours a day (and I have other

priorities, like eating).

Steve D.

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.

[Guest guest]

Steve,

I'm so sorry that you have experienced this. I was not impressed

with Beth Israel or MGH in Boston when I was there and in fact -

left after one appointment at each. Additionally - at least at that

time - I found that Athena Labs constantly makes errors and this was

not acceptable to me. I then found my way to Dr Cohen at the

Cleveland Clinic which was the choice for me at that time - although

difficult and expensive.

Now there is Dr Mark Korson in New England who is what I consider an

expert on Mito for that area. If you can move beyond this

disappointment, I would try to get an appointment with him at New

England Medical Center. Here is a short bio on him.

Mark Korson, M.D.

Dr. Korson's medical training at the University of Toronto was

followed by a pediatric residency at Toronto's Hospital for Sick

Children. He completed a genetics/metabolism fellowship at

Children's Hospital in Boston. Dr. Korson was Metabolism Service

Director at Boston Children's for ten years until October 2000. He

is currently the Associate Chief of the Metabolism Service at Tufts-

New England Medical Center and an Associate Professor of Pediatrics

at Tufts University School of Medicine. His interests include the

natural history of metabolic disease (treated and untreated) through

childhood into adulthood, and the development of teaching methods

for training physicians, residents and medical students and

community professionals about metabolic/mitochondrial disease.

Unfortunately, his chat was never edited and added to the MDA chats

when he was a guest but he will be coming back to chat with us

sometime in May I believe. We are still setting this up.

In the meantime, if at all possible, send me a list of your symptoms

and I do mean every one of them. There is a list of automatic

approval requirements for SSDI and you just might meet one of them

as this list is very long.

Alice

[Guest guest]

Alice,

Does Dr. Korson see adults,

Donna K

---- Alice justagram14@...> wrote:

>

>

> Steve,

>

> I'm so sorry that you have experienced this. I was not impressed

> with Beth Israel or MGH in Boston when I was there and in fact -

> left after one appointment at each. Additionally - at least at that

> time - I found that Athena Labs constantly makes errors and this was

> not acceptable to me. I then found my way to Dr Cohen at the

> Cleveland Clinic which was the choice for me at that time - although

> difficult and expensive.

>

> Now there is Dr Mark Korson in New England who is what I consider an

> expert on Mito for that area. If you can move beyond this

> disappointment, I would try to get an appointment with him at New

> England Medical Center. Here is a short bio on him.

>

>

> Mark Korson, M.D.

> Dr. Korson's medical training at the University of Toronto was

> followed by a pediatric residency at Toronto's Hospital for Sick

> Children. He completed a genetics/metabolism fellowship at

> Children's Hospital in Boston. Dr. Korson was Metabolism Service

> Director at Boston Children's for ten years until October 2000. He

> is currently the Associate Chief of the Metabolism Service at Tufts-

> New England Medical Center and an Associate Professor of Pediatrics

> at Tufts University School of Medicine. His interests include the

> natural history of metabolic disease (treated and untreated) through

> childhood into adulthood, and the development of teaching methods

> for training physicians, residents and medical students and

> community professionals about metabolic/mitochondrial disease.

>

> Unfortunately, his chat was never edited and added to the MDA chats

> when he was a guest but he will be coming back to chat with us

> sometime in May I believe. We are still setting this up.

>

> In the meantime, if at all possible, send me a list of your symptoms

> and I do mean every one of them. There is a list of automatic

> approval requirements for SSDI and you just might meet one of them

> as this list is very long.

>

> Alice

>

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

[Guest guest]

This is for Steve: I was 67 years old when I was no longer able to drag my

right leg to my workstation. I was allowed to park all day in a handicapped

parking spot so I would be closer to the building, but then I had to walk quite

a distance after I got inside the building. I moved to where I live now as I

knew I was going to have a problem continuing to work and I had to cut corners.

We had a bad snow/ice storm and I knew I shouldn't drive myself to work any

longer so I made arrangements for the Topeka Transit lift to take me to and from

work. There was still ice in the apartment parking lot and when the Lift let me

out and drove off, I lost my balance and fell. A neighbor girl came and helped

me into my apartment. I was unable to go into work the rest of the week and my

manager said that if I could get a statement from one or more of my doctors they

would put in a short term disability claim for me. The first try bombed as my

previous neurologist sent in a statement that I

had severe peripheral neuropathy in both legs, my primary care doctor neglected

to mention that I have a heart condition, COPD and misc other conditions. He

wrote in and said that I have arthritis in my left knee? I finally went to see

Dr. Baker (my orthopaedic doctor) about my severe back pain. His letter did it

for me! He stated that he had injected my left knee, which I have severe

osterarthritis in, as well as degenerative scolosis with translocation,

mid-lumbar spine, hypertension, status post seizures, on Dilantin. His

recommendation stated that: It is the opinion of this examiner that the patient

is severly handicapped in mobility. With a parkinson-like condition associated

with severe osteoarthritis of the lumbar spine. Left knee ambulation is very,

very difficult. She is handicapped from driving and walking. It would be

difficult for this examiner to see how she can maintain any type of active job

involvement. Dr. Baker is the doctor that diagnosed me with a

Mytochondrial Dysfunction and my neurosurgeon told my Grandson that in his

opinion I have Mytochondrial Myopathy. At any rate I was able to get my short

term disability thru until August 13, 2004. I was able to receive 60% of my

wages until then. The application for long term disability went right thru and

it enables me to still be classified as an employee until December 31, 2005 and

I am able to continue my Cigna insurance, but I am only able to receive a very

small monetary amount. It's not quite enough to pay my Cigna insurance but at

least I am able to afford my medications. All this does have a meaning to it

other than boring you with my health conditions. You need to find one or more

of your doctors to send in a letter similar to the one that Dr. Baker wrote for

me, it has to give detailed information about your health condition/conditions.

He also got the Post Office to let me have a mailbox at my apartment, which is

totally unheard of in this complex. I am the only

person with a " whitebox " at my apartment door, Dr. Baker pulls no punches, he

tells it like it is! I only hope you have a caring doctor to help you with your

SSDI. This is more important to you as you are Much younger than I am. My

foster-daughter is 47 and she has been out on SSDI for several years. She had a

problem getting it as her doctors sort of did like my other doctors did until

she talked to a different doctor that she hadn't seen for a while and he told

her to come in and he would run her thru every type of test she felt her

insurance would pay for. He did and she finally got her SSDI. Good luck and

God Bless. I will keep you in my prayers! Dolores

Barbara Seaman wheatchild@...> wrote:

Steve, I wish I could offer more than sympathy. I have never gone through

SSDI evaluation because I only taught 5 years way back when---not enough

work credits to qualify. From what I hear, it seems that those who are most

successful with these applications have a personal physician who is willing

to go to bat for them, write letters, bang on doors and otherwise squawk.

Patient squawking does not have the same effect, unfortunately. If the MGH

neuro is the same one who is never in town or returns phone calls, I don't

suppose he will turn into a patient advocate overnight. Will his office even

respond to queries about why the tests were switched? I wonder, given what

you've said. If this happened to me, I would call my supernurse who would

immediately alert my doctor who'd get right on the phone and find out where

things got screwed up. Lacking this kind of help, I don't know what I'd do.

Waging battle against the system takes so much energy. I have taken up a few

of these battles in the past and won (eventually) but the cost is high,

emotionally and physically. It sounds like you need something on paper from

a physician to confirm MSL. Would that be a more productive battle for now?

Well,,,,,,,,,,,,just some thoughts. Whatever you do, don't give up. Regroup,

rethink.

Barbara

_____

From: Steve

Sent: Sunday, March 06, 2005 2:44 AM

To:

Subject: mito blood test screwed up somehow

Hi all

Last November (four months ago) " my " neuro doc from MGH had his office call

me, to schedule what they called a " mitochondrial myopathy mtDNA "

whole-blood evaluation. After some delays with them not getting back to me,

I was able to determine that this was to be drawn there and sent to Athena

Diagnostics. I looked up this exact test #519 on Athena's web site.

I FINALLY on Friday received from my doc's office the nine-page report. What

I had to go through (from start to end) to get this mailed to me is just an

amusing sidebar in what appears to be a never-ending struggle. ONE highlight

of THIS sidebar: at one point I was in the blood lab at MGH (I had traveled

four hours round trip for this) and they had no record at all of me or the

ordered test. Though it was late in the day, one of my doc's office staff

was finally able to come running down with some paper work, so " all was

well " .

I just found out by reading the report that they actually performed a

" complete CMT " evaluation, test #390. I suspect that this staffer just

scribbled in whatever test it is that they do more often. Or something. I

mean, I DO have peripheral neuropathy, which apparently indicates the CMT

(#390) panel. But in fact I have also SUPPOSEDLY been diagnosed with MSL of

mito cause, and so the mito (#519) panel not only makes far more sense but

is also what they TOLD me they were planning, originally.

This mito test is what I have been holding out hope for, because my SSDI

office is not believing one word of what I report, as " unverifiable "

symptoms (I could be making it all up). And they are having no more luck

actually getting info from my doc, than I have.

BTW my EMG/NC (four painful hours, sort of a mini Abu Grahib) from that day

in mid-Nov. shows considerable sensory damage, etc., consistent with PN and

of course mito/MSL. But SSDI could care less, because they don't even know

what PN is, let alone EMG. Further, my brain MRI from that day is negative.

I tried to tell them to image my NECK also, because that's where huge

lipomas are, not to mention obvious spinal problems that are causing

radiating pains and numbness down my arms. But they had their orders, so

brain MRI is what I got.

There are really no words for my feelings about all this. I try to tell

myself that people have been getting f**ked by one system or another since

the beginning of time, but that's cold comfort. I might be able to do

something, except that I am growing increasingly unable to think straight or

be functional for more than a couple of hours a day (and I have other

priorities, like eating).

Steve D.

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.