Re: biopsy results frustrated!!!!

September 25, 2004

Hi, Dawn

I am so sorry you are going through all the frustrations of trying to

get proper care. It reminds me so much of what has happened to me, and

many of us, I am sure. It is just not right, but there it is, smacking

us in the face, as though we don't have enough to challenge us.

Cleveland Clinic has been difficult for me, but so have most doctors.

I now routinely have the doctor write " copy to patient " on every order

- lab test or otherwise, and SOME of the time I actually get a copy!

When I do, at least I can take it in, for those times that my chart or

the result is not there. I can also research the result, and have more

meaningful questions ready. But, what a task.

What a crime, the way medical care is delivered these days! My

personal approach has been to be very assertive, but that has a price

also. We have to just keep trying every way we know how until we get

lucky.

Dawn, keep pushing, good luck, and know that it is NOT you.

Take care

Sunny

> 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.

>

September 25, 2004

--- Thanks for the words of encouragement Sunny. I like to keep all

of my records. Things have not been told to me in this office. When

I had autonomic testing after my visit I ordered the report. I was

told I had small fiber neuropathy. I asked if there was anything

special I can do.I was not told anything and did not know what to

ask. I went home with a beta-blocker that made my asthma bad. My PCP

took me off of it and put me on something else. I was unable to find

anything on small fiber neuropathy on the internet. I ordered the

report and it stated orthostatic tachycardia. I looked that up and

came up with POTS. I had all of the symptoms. I gave the information

to my PCP and she sent me to a cardiologist, who treated it and gave

me wonderful advice. Now my PCP treats it and treatment has helped

me a lot. I was in bed a majority of time

I have had a medical DR loose all of my own records when he wanted

them to copy. I have gone to appointments and they don't have my

chart or my lab results. They usually have to order these. My PCP

never gets copies even though I ask them to send them to her. That

is why I like to have everything. Having my records helps me to

feel more in control.

I don't think I have the patience to see the fellow again. I see him

first so I do not have to wait eight months to be seen. I am

normally an easy going person. But I have lost my tolerance. I feel

like I spend the whole time teaching the fellow and he still looks

puzzled. I keep repeating the same thing and he asks the same

questions over and over again.

It is sad how difficult it is for ill people to get proper care.

I feel very blessed to have a great PCP, but she can only do so

much. .

Dawn A

In , z39z@a... wrote:

> Hi, Dawn

>

> I am so sorry you are going through all the frustrations of trying

to

> get proper care. It reminds me so much of what has happened to

me, and

> many of us, I am sure. It is just not right, but there it is,

smacking

> us in the face, as though we don't have enough to challenge us.

> Cleveland Clinic has been difficult for me, but so have most

doctors.

> I now routinely have the doctor write " copy to patient " on every

order

> - lab test or otherwise, and SOME of the time I actually get a

copy!

> When I do, at least I can take it in, for those times that my

chart or

> the result is not there. I can also research the result, and have

more

> meaningful questions ready. But, what a task.

>

> What a crime, the way medical care is delivered these days!

My

> personal approach has been to be very assertive, but that has a

price

> also. We have to just keep trying every way we know how until we

get

> lucky.

>

> Dawn, keep pushing, good luck, and know that it is NOT you.

>

> Take care

>

> Sunny

>

> > 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.

> >

September 25, 2004

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

September 25, 2004

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

September 25, 2004

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

September 26, 2004

Dawn,

I had all my muscle biopsy results in a month and that included the electron

transport chain and everything. They said several months butt he results

were back in a month.

Hope you get the report soon so you can move on in whatever direction your

choose.

September 26, 2004

Dawn,

I had all my muscle biopsy results in a month and that included the electron

transport chain and everything. They said several months butt he results

were back in a month.

Hope you get the report soon so you can move on in whatever direction your

choose.

September 26, 2004

Dawn,

I had all my muscle biopsy results in a month and that included the electron

transport chain and everything. They said several months butt he results

were back in a month.

Hope you get the report soon so you can move on in whatever direction your

choose.

September 26, 2004

Dawn,

I understand your frustration! The medical system is challenging

enough for the average patient, but throw in a rare disorder and the

problems multiply.

I have come to believe that in order to navigate the medical system

with a rare disorder, or get a diagnosis for a rare disorder, it is

necessary to have at least one or two people IN the system (doctors,

nurses) who are willing to go to bat for you and go the extra mile.

That is hard to find, and in my experience usually happens only in

long-term relationships. I have been with one doctor for 21 years

and he and his nurse have smoothed the path for me many many times.

When I'm having a problem with the system, he calls my other doctors

and explains my needs, which works absolute miracles. Doors suddenly

open, attitudes change. I never ask him to do this and often find

out about it only from someone else. Sometimes I have no idea how he

knew I was having a problem, but apparently the hospital grapevine

works well. (If everything else there worked as well, there would be

no problems for him to solve!) Several times his nurse has made

trips to the medical records dept in the dungeon of a large teaching

hospital when I have been unable to get the reports after many

attempts. Last year it took 6 months to get a report on a 24-hour

urine collection. Everyone kept passing the buck until my angel

nurse volunteered to help, even though it was not the doctor she

works for who ordered the test.

Anyway, I would just encourage you to keep doing what you are doing

and stick with the doctors who take a personal interest in your case

and develop a long-term relationship with them. Being a patient

these days sure takes a lot of patience! (And a fair amount of

chutzpah too.)

Barbara

> 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

September 26, 2004