Re: biopsy results frustrated!!!!

[Guest guest]

Yes, it was a royal mess and the tissue WAS lost for months. I threw

out the results of that biopsy before I even had the mito dx because

there was no way that I trusted what was said.

Laureta Fitzgerald wrote:

>Dawn

>

>I have mentioned before, but am beginning to believe it even more that it is

>not the doctor that we need to be picking, but his staff. I really do think

>that we need to look at the skills and caring of the doctor, but staff can

>be the most frustrating thing to deal with in a doctor's office.

>

> and I had muscle biopsies that were suppose to be frozen and sent to

>a lab. We kept checking and they said they would send it soon. Then they

>said they couldn't find it. Finally the lab got a specimen and evaluated it,

>but we have a feeling that the tissue really belonged to someone else.

> might remember, but it was lost for several months if I remember

>clearly. I sure hope no one has to deal with this.

>

>Hugs,

>laurie

>

>

>

>>

>>Reply-To:

>>Date: Sun, 26 Sep 2004 15:15:25 -0000

>>To:

>>Subject: Re: biopsy results frustrated!!!!

>>

>>---Laurie,

>>

>>My biopsy was done on August 27th. It was not looked at or frozen

>>until the Sept 1st. THis is what the preliminary report reads. That

>>concerns me.

>>

>>Yousaid your reports trikled in. So maybe this was not everything,

>>it is just the electron transport chain. I will get a copy of the

>>report sooner or later. The nurse could of sent a copy down to

>>medical records, it would of taken two minutes. I was right their at

>>the office, but had to talk to her on the phone. She had the report

>>in front of her. The other thing was that calling and leaving a

>>message that the lab was normal on my answering machine...I do not

>>think that is legal anymore. I am not going to make a stink about

>>it, I just feel she is rude. She has been rude to me before and it

>>is intimidating.

>>

>>Thanks Dawn

>>

>>

>>In , Laureta Fitzgerald

>>wrote:

>>

>>

>>>Dawn

>>>

>>>A negative muscle biopsy doesn't rule out mito. It could be the

>>>

>>>

>>sample was

>>

>>

>>>taken from an area that was not affected or the labs ordered were

>>>

>>>

>>not

>>

>>

>>>extensive enough. I had to go to Atlanta for a biopsy that worked

>>>

>>>

>>on the

>>

>>

>>>muscle immediately. I had had several before this one.

>>>

>>>I believe the electron microscopy has to be done on a frozen

>>>

>>>

>>section. If it

>>

>>

>>>has to shipped to another lab, it is done frozen. The muscle

>>>

>>>

>>tissue also has

>>

>>

>>>to be stretched immediately before it retracts and is unusable.

>>>

>>>Lab results trickle in, especially if some of them have to be sent

>>>

>>>

>>out. I

>>

>>

>>>waited almost two years for my final report with all the results.

>>>

>>>

>>I hope you

>>

>>

>>>do much better than that.

>>>

>>>laurie

>>>

>>>

>>>

>>>>From: " dawnanich "

>>>>Reply-To:

>>>>Date: Sun, 26 Sep 2004 01:35:24 -0000

>>>>To:

>>>>Subject: biopsy results frustrated!!!!

>>>>

>>>>I got a message on my answering machine from the nurse that my

>>>>muscle biopsy was normal. My intial report showed mild

>>>>

>>>>

>>abnormalities

>>

>>

>>>>on the mitochondria. It was sent out for electron transport

>>>>

>>>>

>>chain,

>>

>>

>>>>mitochondrial enzymse and electron microscopy.

>>>>

>>>>I tried to get more information from the nurse to see if it was

>>>>

>>>>

>>all

>>

>>

>>>>of my results. She said it was from Cleveland Clinic and said

>>>>electron transport chain. I asked if was the mitochondrial enzyme

>>>>and electron microscopy results too. She did not know and was not

>>>>willing to find the answer. I tried to get a copy of the results.

>>>>Lab results are kept on the computer and you can get copies

>>>>immediately. Medical records did not have a copy on the

>>>>

>>>>

>>computer. I

>>

>>

>>>>asked the nurse if she could send a copy down to medical records.

>>>>She was not willing. HUGH!!!!!

>>>>

>>>>Would these results all come in at the same time on the samelab

>>>>report? Or would they be separate? The doctor told me it would

>>>>

>>>>

>>take

>>

>>

>>>>about three months to get the results back. It has only been a

>>>>month.

>>>>

>>>>I am so frustrated with this facility. I have been going there

>>>>

>>>>

>>two

>>

>>

>>>>years and have had so many frustrating things happen. I was

>>>>

>>>>

>>intially

>>

>>

>>>>diagnosed with conversion disorder until an outside Dr proved

>>>>

>>>>

>>them

>>

>>

>>>>wrong. He ordered an EMG from them. I had three Drs try and get

>>>>

>>>>

>>me

>>

>>

>>>>into a different neurologist, but my Dr was not willing to give

>>>>

>>>>

>>me

>>

>>

>>>>up to one of her associates. At my appointments they never have

>>>>

>>>>

>>my

>>

>>

>>>>chart or all of my lab results. the list goes on....

>>>>

>>>>Does anyone know if Dr Gropman is taking adults? I need to pursue

>>>>this furthur, because my children are affected by it. I am so

>>>>frustrated.

>>>>

>>>>Dawn a

>>>>

>>>>

>>>>

>>>>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]

We haven't had tissue lost, but we have had results " lost. " This

happened to my son twice for two different biopsies. On one of his

biopsies we were NEVER given a single bit of information about what

was done with the tissue or what the results were, despite two years

of trying and numerous letters to various labs and doctors. On

another one of his biopsies, after six months we were given brief

results in a letter but later found out those were wrong (as were

other things in the letter) and were never able to get a copy of the

original lab report to find out what the REAL results were.

In another fiasco, six members of our family had muscle biopsies at

the NIH and the tissue was sent to a well-known expert. We were

never given ANY information about what was done with all that tissue

from all our family members and what the results were, despite years

of letter writing.

I really feel strongly that medical professionals, whether in

private practice or in research, have an ethical obligation to

provide results of testing of any kind to patients, especially

something as invasive as a muscle biopsy.

But don't get me up my soapbox or I'll never get off.... :-)

Barbara

> >>

> >>

> >>>Dawn

> >>>

> >>>A negative muscle biopsy doesn't rule out mito. It could be the

> >>>

> >>>

> >>sample was

> >>

> >>

> >>>taken from an area that was not affected or the labs ordered

were

> >>>

> >>>

> >>not

> >>

> >>

> >>>extensive enough. I had to go to Atlanta for a biopsy that

worked

> >>>

> >>>

> >>on the

> >>

> >>

> >>>muscle immediately. I had had several before this one.

> >>>

> >>>I believe the electron microscopy has to be done on a frozen

> >>>

> >>>

> >>section. If it

> >>

> >>

> >>>has to shipped to another lab, it is done frozen. The muscle

> >>>

> >>>

> >>tissue also has

> >>

> >>

> >>>to be stretched immediately before it retracts and is unusable.

> >>>

> >>>Lab results trickle in, especially if some of them have to be

sent

> >>>

> >>>

> >>out. I

> >>

> >>

> >>>waited almost two years for my final report with all the

results.

> >>>

> >>>

> >>I hope you

> >>

> >>

> >>>do much better than that.

> >>>

> >>>laurie

> >>>

> >>>

> >>>

> >>>>From: " dawnanich "

> >>>>Reply-To:

> >>>>Date: Sun, 26 Sep 2004 01:35:24 -0000

> >>>>To:

> >>>>Subject: biopsy results frustrated!!!!

> >>>>

> >>>>I got a message on my answering machine from the nurse that my

> >>>>muscle biopsy was normal. My intial report showed mild

> >>>>

> >>>>

> >>abnormalities

> >>

> >>

> >>>>on the mitochondria. It was sent out for electron transport

> >>>>

> >>>>

> >>chain,

> >>

> >>

> >>>>mitochondrial enzymse and electron microscopy.

> >>>>

> >>>>I tried to get more information from the nurse to see if it was

> >>>>

> >>>>

> >>all

> >>

> >>

> >>>>of my results. She said it was from Cleveland Clinic and said

> >>>>electron transport chain. I asked if was the mitochondrial

enzyme

> >>>>and electron microscopy results too. She did not know and was

not

> >>>>willing to find the answer. I tried to get a copy of the

results.

> >>>>Lab results are kept on the computer and you can get copies

> >>>>immediately. Medical records did not have a copy on the

> >>>>

> >>>>

> >>computer. I

> >>

> >>

> >>>>asked the nurse if she could send a copy down to medical

records.

> >>>>She was not willing. HUGH!!!!!

> >>>>

> >>>>Would these results all come in at the same time on the samelab

> >>>>report? Or would they be separate? The doctor told me it would

> >>>>

> >>>>

> >>take

> >>

> >>

> >>>>about three months to get the results back. It has only been a

> >>>>month.

> >>>>

> >>>>I am so frustrated with this facility. I have been going there

> >>>>

> >>>>

> >>two

> >>

> >>

> >>>>years and have had so many frustrating things happen. I was

> >>>>

> >>>>

> >>intially

> >>

> >>

> >>>>diagnosed with conversion disorder until an outside Dr proved

> >>>>

> >>>>

> >>them

> >>

> >>

> >>>>wrong. He ordered an EMG from them. I had three Drs try and get

> >>>>

> >>>>

> >>me

> >>

> >>

> >>>>into a different neurologist, but my Dr was not willing to give

> >>>>

> >>>>

> >>me

> >>

> >>

> >>>>up to one of her associates. At my appointments they never have

> >>>>

> >>>>

> >>my

> >>

> >>

> >>>>chart or all of my lab results. the list goes on....

> >>>>

> >>>>Does anyone know if Dr Gropman is taking adults? I need to

pursue

> >>>>this furthur, because my children are affected by it. I am so

> >>>>frustrated.

> >>>>

> >>>>Dawn a

> >>>>

> >>>>

> >>>>

> >>>>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]

Dawn

I think getting on a list now is a very good idea. Waiting might find things

better, but there is no assurance they won't be worse. The waiting game is

the most frustrating thing I have had to deal with. I consider myself very

fortunate that I have ended up with some good doctors, although not a team.

Get your name on any list there is - it can't hurt and may be the best thing

you ever do.

laurie

>

> Reply-To:

> Date: Sun, 26 Sep 2004 20:50:40 -0000

> To:

> Subject: Re: biopsy results frustrated!!!!

>

> ---I can not even imagine how frustrating it was for you and !

> I would be really upset if they lost the muscle tissue after going

> through and being charged for the surgury.

>

> Yes staff is very important. I wish I could have my PCP's staff with

> a neurlogist who knows about mito. I guess I am asking for a

> miracle. I am going to call Dr Gropman's office tomorrow. I want to

> get into some before they close up the practice to adults. I was

> going to wait until things get worse, but I want to get on someones

> list.

>

> Dawn a

>

>

>

> In , Laureta Fitzgerald

> wrote:

>> Dawn

>>

>> I have mentioned before, but am beginning to believe it even more

> that it is

>> not the doctor that we need to be picking, but his staff. I really

> do think

>> that we need to look at the skills and caring of the doctor, but

> staff can

>> be the most frustrating thing to deal with in a doctor's office.

>>

>> and I had muscle biopsies that were suppose to be frozen

> and sent to

>> a lab. We kept checking and they said they would send it soon.

> Then they

>> said they couldn't find it. Finally the lab got a specimen and

> evaluated it,

>> but we have a feeling that the tissue really belonged to someone

> else.

>> might remember, but it was lost for several months if I

> remember

>> clearly. I sure hope no one has to deal with this.

>>

>> Hugs,

>> laurie

>>

>>> From: " dawnanich "

>>> Reply-To:

>>> Date: Sun, 26 Sep 2004 15:15:25 -0000

>>> To:

>>> Subject: Re: biopsy results frustrated!!!!

>>>

>>> ---Laurie,

>>>

>>> My biopsy was done on August 27th. It was not looked at or frozen

>>> until the Sept 1st. THis is what the preliminary report reads.

> That

>>> concerns me.

>>>

>>> Yousaid your reports trikled in. So maybe this was not

> everything,

>>> it is just the electron transport chain. I will get a copy of

> the

>>> report sooner or later. The nurse could of sent a copy down to

>>> medical records, it would of taken two minutes. I was right

> their at

>>> the office, but had to talk to her on the phone. She had the

> report

>>> in front of her. The other thing was that calling and leaving a

>>> message that the lab was normal on my answering machine...I do

> not

>>> think that is legal anymore. I am not going to make a stink about

>>> it, I just feel she is rude. She has been rude to me before and

> it

>>> is intimidating.

>>>

>>> Thanks Dawn

>>>

>>>

>>> In , Laureta Fitzgerald

>>> wrote:

>>>> Dawn

>>>>

>>>> A negative muscle biopsy doesn't rule out mito. It could be the

>>> sample was

>>>> taken from an area that was not affected or the labs ordered

> were

>>> not

>>>> extensive enough. I had to go to Atlanta for a biopsy that

> worked

>>> on the

>>>> muscle immediately. I had had several before this one.

>>>>

>>>> I believe the electron microscopy has to be done on a frozen

>>> section. If it

>>>> has to shipped to another lab, it is done frozen. The muscle

>>> tissue also has

>>>> to be stretched immediately before it retracts and is unusable.

>>>>

>>>> Lab results trickle in, especially if some of them have to be

> sent

>>> out. I

>>>> waited almost two years for my final report with all the

> results.

>>> I hope you

>>>> do much better than that.

>>>>

>>>> laurie

>>>>

>>>>> From: " dawnanich "

>>>>> Reply-To:

>>>>> Date: Sun, 26 Sep 2004 01:35:24 -0000

>>>>> To:

>>>>> Subject: biopsy results frustrated!!!!

>>>>>

>>>>> I got a message on my answering machine from the nurse that my

>>>>> muscle biopsy was normal. My intial report showed mild

>>> abnormalities

>>>>> on the mitochondria. It was sent out for electron transport

>>> chain,

>>>>> mitochondrial enzymse and electron microscopy.

>>>>>

>>>>> I tried to get more information from the nurse to see if it was

>>> all

>>>>> of my results. She said it was from Cleveland Clinic and said

>>>>> electron transport chain. I asked if was the mitochondrial

> enzyme

>>>>> and electron microscopy results too. She did not know and was

> not

>>>>> willing to find the answer. I tried to get a copy of the

> results.

>>>>> Lab results are kept on the computer and you can get copies

>>>>> immediately. Medical records did not have a copy on the

>>> computer. I

>>>>> asked the nurse if she could send a copy down to medical

> records.

>>>>> She was not willing. HUGH!!!!!

>>>>>

>>>>> Would these results all come in at the same time on the samelab

>>>>> report? Or would they be separate? The doctor told me it would

>>> take

>>>>> about three months to get the results back. It has only been a

>>>>> month.

>>>>>

>>>>> I am so frustrated with this facility. I have been going there

>>> two

>>>>> years and have had so many frustrating things happen. I was

>>> intially

>>>>> diagnosed with conversion disorder until an outside Dr proved

>>> them

>>>>> wrong. He ordered an EMG from them. I had three Drs try and get

>>> me

>>>>> into a different neurologist, but my Dr was not willing to give

>>> me

>>>>> up to one of her associates. At my appointments they never have

>>> my

>>>>> chart or all of my lab results. the list goes on....

>>>>>

>>>>> Does anyone know if Dr Gropman is taking adults? I need to

> pursue

>>>>> this furthur, because my children are affected by it. I am so

>>>>> frustrated.

>>>>>

>>>>> Dawn a

>>>>>

>>>>>

>>>>>

>>>>> 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]

Hi and Dawn A.

you are so right. By law if a Doctor or doctors office, lab, or any other

type of physican calls your home and gets an answering machine they are NOT to

give the results via the answering machine, or to anyone who answers the phone

other than the patient themselves.

The only way for this to change is for the patient to state to the Doctors

office, lab, etc. that they have your permission to leave the results of tests

on your answering machine, or that they can give the results to a certain person

who answers the phone.

I always tell the Doctors office, (or whomever) that they can leave the results

on the answering machine and if I am not home and my husband answers than they

can give him the results or message they are calling about. They put a note on

the inside front page of my file saying stating my wishes. And I know it is

there, I have seen it!!!

Ann-Marie

[Guest guest]

---Thanks Laurie!

In , Laureta Fitzgerald

wrote:

> Dawn

>

> I think getting on a list now is a very good idea. Waiting might

find things

> better, but there is no assurance they won't be worse. The waiting

game is

> the most frustrating thing I have had to deal with. I consider

myself very

> fortunate that I have ended up with some good doctors, although

not a team.

> Get your name on any list there is - it can't hurt and may be the

best thing

> you ever do.

>

> laurie

>

> > From: " dawnanich "

> > Reply-To:

> > Date: Sun, 26 Sep 2004 20:50:40 -0000

> > To:

> > Subject: Re: biopsy results frustrated!!!!

> >

> > ---I can not even imagine how frustrating it was for you and

!

> > I would be really upset if they lost the muscle tissue after

going

> > through and being charged for the surgury.

> >

> > Yes staff is very important. I wish I could have my PCP's staff

with

> > a neurlogist who knows about mito. I guess I am asking for a

> > miracle. I am going to call Dr Gropman's office tomorrow. I want

to

> > get into some before they close up the practice to adults. I was

> > going to wait until things get worse, but I want to get on

someones

> > list.

> >

> > Dawn a

> >

> >

> >

> > In , Laureta Fitzgerald

> > wrote:

> >> Dawn

> >>

> >> I have mentioned before, but am beginning to believe it even

more

> > that it is

> >> not the doctor that we need to be picking, but his staff. I

really

> > do think

> >> that we need to look at the skills and caring of the doctor, but

> > staff can

> >> be the most frustrating thing to deal with in a doctor's office.

> >>

> >> and I had muscle biopsies that were suppose to be frozen

> > and sent to

> >> a lab. We kept checking and they said they would send it soon.

> > Then they

> >> said they couldn't find it. Finally the lab got a specimen and

> > evaluated it,

> >> but we have a feeling that the tissue really belonged to someone

> > else.

> >> might remember, but it was lost for several months if I

> > remember

> >> clearly. I sure hope no one has to deal with this.

> >>

> >> Hugs,

> >> laurie

> >>

> >>> From: " dawnanich "

> >>> Reply-To:

> >>> Date: Sun, 26 Sep 2004 15:15:25 -0000

> >>> To:

> >>> Subject: Re: biopsy results frustrated!!!!

> >>>

> >>> ---Laurie,

> >>>

> >>> My biopsy was done on August 27th. It was not looked at or

frozen

> >>> until the Sept 1st. THis is what the preliminary report reads.

> > That

> >>> concerns me.

> >>>

> >>> Yousaid your reports trikled in. So maybe this was not

> > everything,

> >>> it is just the electron transport chain. I will get a copy of

> > the

> >>> report sooner or later. The nurse could of sent a copy down to

> >>> medical records, it would of taken two minutes. I was right

> > their at

> >>> the office, but had to talk to her on the phone. She had the

> > report

> >>> in front of her. The other thing was that calling and leaving a

> >>> message that the lab was normal on my answering machine...I do

> > not

> >>> think that is legal anymore. I am not going to make a stink

about

> >>> it, I just feel she is rude. She has been rude to me before and

> > it

> >>> is intimidating.

> >>>

> >>> Thanks Dawn

> >>>

> >>>

> >>> In , Laureta Fitzgerald

> >>> wrote:

> >>>> Dawn

> >>>>

> >>>> A negative muscle biopsy doesn't rule out mito. It could be

the

> >>> sample was

> >>>> taken from an area that was not affected or the labs ordered

> > were

> >>> not

> >>>> extensive enough. I had to go to Atlanta for a biopsy that

> > worked

> >>> on the

> >>>> muscle immediately. I had had several before this one.

> >>>>

> >>>> I believe the electron microscopy has to be done on a frozen

> >>> section. If it

> >>>> has to shipped to another lab, it is done frozen. The muscle

> >>> tissue also has

> >>>> to be stretched immediately before it retracts and is

unusable.

> >>>>

> >>>> Lab results trickle in, especially if some of them have to be

> > sent

> >>> out. I

> >>>> waited almost two years for my final report with all the

> > results.

> >>> I hope you

> >>>> do much better than that.

> >>>>

> >>>> laurie

> >>>>

> >>>>> From: " dawnanich "

> >>>>> Reply-To:

> >>>>> Date: Sun, 26 Sep 2004 01:35:24 -0000

> >>>>> To:

> >>>>> Subject: biopsy results frustrated!!!!

> >>>>>

> >>>>> I got a message on my answering machine from the nurse that

my

> >>>>> muscle biopsy was normal. My intial report showed mild

> >>> abnormalities

> >>>>> on the mitochondria. It was sent out for electron transport

> >>> chain,

> >>>>> mitochondrial enzymse and electron microscopy.

> >>>>>

> >>>>> I tried to get more information from the nurse to see if it

was

> >>> all

> >>>>> of my results. She said it was from Cleveland Clinic and said

> >>>>> electron transport chain. I asked if was the mitochondrial

> > enzyme

> >>>>> and electron microscopy results too. She did not know and was

> > not

> >>>>> willing to find the answer. I tried to get a copy of the

> > results.

> >>>>> Lab results are kept on the computer and you can get copies

> >>>>> immediately. Medical records did not have a copy on the

> >>> computer. I

> >>>>> asked the nurse if she could send a copy down to medical

> > records.

> >>>>> She was not willing. HUGH!!!!!

> >>>>>

> >>>>> Would these results all come in at the same time on the

samelab

> >>>>> report? Or would they be separate? The doctor told me it

would

> >>> take

> >>>>> about three months to get the results back. It has only been

a

> >>>>> month.

> >>>>>

> >>>>> I am so frustrated with this facility. I have been going

there

> >>> two

> >>>>> years and have had so many frustrating things happen. I was

> >>> intially

> >>>>> diagnosed with conversion disorder until an outside Dr proved

> >>> them

> >>>>> wrong. He ordered an EMG from them. I had three Drs try and

get

> >>> me

> >>>>> into a different neurologist, but my Dr was not willing to

give

> >>> me

> >>>>> up to one of her associates. At my appointments they never

have

> >>> my

> >>>>> chart or all of my lab results. the list goes on....

> >>>>>

> >>>>> Does anyone know if Dr Gropman is taking adults? I need to

> > pursue

> >>>>> this furthur, because my children are affected by it. I am so

> >>>>> frustrated.

> >>>>>

> >>>>> Dawn a

> >>>>>

> >>>>>

> >>>>>

> >>>>> 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]

> They should wait and give all of the reports at once like you said.

> I feel that is much better.

I have to disagree with that, I got partial results after about 8

weeks from my muscle biopsy, and am still waiting for results from

additional testing after almost 2 years. I have three kids, one has

got significant developmental delays and he is getting started on his

own evaluation.

I think any doctor has an obligation to review any abnormal results

ASAP and report them to the patient, and put together a treatment

plan or set up a consultation with a specialist. Or, if the ordering

doctor doesn't understand the results, they should set up a

consultation ASAP with a specialist and have the patient get the info

from them.

I do know that I have a Complex I defect, but I don't know why or

how. But at least I know that much and am getting treatment based on

that.

Take care,

RH

>

> In , " whoewe2002 " wrote:

> > Dawn,

> > I'm sorry that you haven't made much progress with getting your

> > diagnosis yet. If you've managed to get an initial report from

> the

> > biopsy report after a month - you're doing better than I am (if

> that

> > makes you feel any better).

> > I was told I'd get a report after about three months and they're

> > keeping pretty tight lipped about the results until everything is

> > done. Maybe it's better that way, though. I think it's probably

> > more frustrating to know a little - and have to speculate on what

> > that means. (Although some days, I'd give anything to know ...

> just

> > a little.)

> >

> > Hope you manage to find out more soon.

> >

> >

> > Maggie

> >

> >

> > > I got a message on my answering machine from the nurse that my

> > > muscle biopsy was normal. My intial report showed mild

> > abnormalities

> > > on the mitochondria. It was sent out for electron transport

> chain,

> > > mitochondrial enzymse and electron microscopy.

> > >

> > > I tried to get more information from the nurse to see if it was

> > all

> > > of my results. She said it was from Cleveland Clinic and said

> > > electron transport chain. I asked if was the mitochondrial

> enzyme

> > > and electron microscopy results too. She did not know and was

> not

> > > willing to find the answer. I tried to get a copy of the

> results.

> > > Lab results are kept on the computer and you can get copies

> > > immediately. Medical records did not have a copy on the

> computer.

> > I

> > > asked the nurse if she could send a copy down to medical

> records.

> > > She was not willing. HUGH!!!!!

> > >

> > > Would these results all come in at the same time on the samelab

> > > report? Or would they be separate? The doctor told me it would

> > take

> > > about three months to get the results back. It has only been a

> > > month.

> > >

> > > I am so frustrated with this facility. I have been going there

> two

> > > years and have had so many frustrating things happen. I was

> > intially

> > > diagnosed with conversion disorder until an outside Dr proved

> them

> > > wrong. He ordered an EMG from them. I had three Drs try and get

> me

> > > into a different neurologist, but my Dr was not willing to give

> me

> > > up to one of her associates. At my appointments they never have

> my

> > > chart or all of my lab results. the list goes on....

> > >

> > > Does anyone know if Dr Gropman is taking adults? I need to

> pursue

> > > this furthur, because my children are affected by it. I am so

> > > frustrated.

> > >

> > > Dawn a

[Guest guest]

---IF they are going to let me know the results, they should at

least know what they are telling me. I don't know if this was all of

the results or if they are still waiting on some. That is what I

want to know and they can not tell me. They should not tell someone

something was normal and not tell them what was normal.

Two years is a long time to wait. Are you waiting for DNA testing?

What test are they waiting for. I agree with what you said. They

should tell you the results of the tests as they come in especially

if one is going to take a long time. If they are supposed to come in

around the same time, maybe then they should wait. I do have an

appointment in November, so I will know more then. I just want to

have more control and know more specifics about my results. Their is

no reason she could not send the results down to medical records or

take a minute and show me the results. I am not usually a demanding

patient. But I no longer want to go to appointments and have the Dr

not have all of the information in front of them. Having the

documentation is the only control I feel I have over this stupid

illness. Enough rambling.

I am sorry you have had to wait so long and that you have children

affected by this. It is hard when children are involved. I too have

children affected by this. This is what has made me push hard for

answers.

Best Wishes,

dawn a

In , " ohgminion " wrote:

> > They should wait and give all of the reports at once like you

said.

> > I feel that is much better.

>

> I have to disagree with that, I got partial results after about 8

> weeks from my muscle biopsy, and am still waiting for results from

> additional testing after almost 2 years. I have three kids, one

has

> got significant developmental delays and he is getting started on

his

> own evaluation.

>

> I think any doctor has an obligation to review any abnormal

results

> ASAP and report them to the patient, and put together a treatment

> plan or set up a consultation with a specialist. Or, if the

ordering

> doctor doesn't understand the results, they should set up a

> consultation ASAP with a specialist and have the patient get the

info

> from them.

>

> I do know that I have a Complex I defect, but I don't know why or

> how. But at least I know that much and am getting treatment based

on

> that.

>

> Take care,

> RH

>

>

>

>

>

>

>

>

> >

> > In , " whoewe2002 "

wrote:

> > > Dawn,

> > > I'm sorry that you haven't made much progress with getting

your

> > > diagnosis yet. If you've managed to get an initial report

from

> > the

> > > biopsy report after a month - you're doing better than I am

(if

> > that

> > > makes you feel any better).

> > > I was told I'd get a report after about three months and

they're

> > > keeping pretty tight lipped about the results until everything

is

> > > done. Maybe it's better that way, though. I think it's

probably

> > > more frustrating to know a little - and have to speculate on

what

> > > that means. (Although some days, I'd give anything to

know ...

> > just

> > > a little.)

> > >

> > > Hope you manage to find out more soon.

> > >

> > >

> > > Maggie

> > >

> > >

> > > > I got a message on my answering machine from the nurse that

my

> > > > muscle biopsy was normal. My intial report showed mild

> > > abnormalities

> > > > on the mitochondria. It was sent out for electron transport

> > chain,

> > > > mitochondrial enzymse and electron microscopy.

> > > >

> > > > I tried to get more information from the nurse to see if it

was

> > > all

> > > > of my results. She said it was from Cleveland Clinic and

said

> > > > electron transport chain. I asked if was the mitochondrial

> > enzyme

> > > > and electron microscopy results too. She did not know and

was

> > not

> > > > willing to find the answer. I tried to get a copy of the

> > results.

> > > > Lab results are kept on the computer and you can get copies

> > > > immediately. Medical records did not have a copy on the

> > computer.

> > > I

> > > > asked the nurse if she could send a copy down to medical

> > records.

> > > > She was not willing. HUGH!!!!!

> > > >

> > > > Would these results all come in at the same time on the

samelab

> > > > report? Or would they be separate? The doctor told me it

would

> > > take

> > > > about three months to get the results back. It has only been

a

> > > > month.

> > > >

> > > > I am so frustrated with this facility. I have been going

there

> > two

> > > > years and have had so many frustrating things happen. I was

> > > intially

> > > > diagnosed with conversion disorder until an outside Dr

proved

> > them

> > > > wrong. He ordered an EMG from them. I had three Drs try and

get

> > me

> > > > into a different neurologist, but my Dr was not willing to

give

> > me

> > > > up to one of her associates. At my appointments they never

have

> > my

> > > > chart or all of my lab results. the list goes on....

> > > >

> > > > Does anyone know if Dr Gropman is taking adults? I need to

> > pursue

> > > > this furthur, because my children are affected by it. I am

so

> > > > frustrated.

> > > >

> > > > Dawn a