Re: Frustration Frustration Frustration

[Guest guest]

I could not find anything on this, perhaps the

translation for Benign CPK Syndrome is, I do not have a

clue what is wrong with you.

pick up copys of everything, including the slides from

the path lab, and find out though word of mouth, if

they know what they are doing they may not know what

they are looking at.

and take everything to another DR.

my 2 cents

markb

--- McCombs aarondmccombs29@...> wrote:

>

>

> Well another road block. My neurologist called

> yesterday and cancelled my appointment for Monday

> because she said my biopsy came back negative. She

> said I have Benign CPK Syndrome. Whatever that is.

> She told me that the only test that has consistently

> came back positive was that my CPK levels (muscle

> enzymes) have been continiously elevated.

>

> She doesn't want to run me through anymore tests but

> says that I need pysical therapy again, she wants to

> put me onto water therapy, and says that there is

> nothing that can be done for the cramps other than

> put me on a muscle relaxer which I am already on.

>

> I talked to her again today and said that I am not

> satisfied with this because my symptoms are more than

> just the muscle cramping.

>

> I asked her to refer me to Cleveland Clinic for

> another Biopsy. , Barry's wife, has also

> recommended a doctor in Michigan so I am going to

> call them on Monday.

>

> If anyone else has experienced this kind of Diagnoses

> (Benign CPK Syndrome) please let me know because I

> can't find anything on the net about it.

>

> Thanks,

>

>

>

>

[Guest guest]

, A significant elevation of CPK indicates muscle breakdown or

rhadomyolysis, assuming the CPK is at least into the thousands. For

the metabolic myopathies, CPK can easily hit 10,000 to 30,000, and I

have heard from quite a few patients with severe episodes of 200,000

or higher. A CPK in the hundreds would not be considered as

significant. It would also be a significant indicator if your CPK

soars when muscle symptoms worsen or if you have dark urine when the

cramps are severe. Athletes have a " benign " elevated CPK following

intense exercise, but I know you are not exercising at this point,

so that explanation (excuse) could not be used to dismiss the

results. You are wise to seek additional medical help. I am just

very sorry to hear that this biopsy has not produced answers for

you. Unfortunately, this is not unusual. Mark gave you good advice

about getting copies of reports. You need to know which tests were

performed and which disorders were ruled out.

Keep trying! I pray there will be someone who will take the time to

listen and find answers for you.

Barbara

>

>

> Well another road block. My neurologist called yesterday and

cancelled my appointment for Monday because she said my biopsy came

back negative. She said I have Benign CPK Syndrome. Whatever that

is. She told me that the only test that has consistently came back

positive was that my CPK levels (muscle enzymes) have been

continiously elevated.

>

> She doesn't want to run me through anymore tests but says that I

need pysical therapy again, she wants to put me onto water therapy,

and says that there is nothing that can be done for the cramps other

than put me on a muscle relaxer which I am already on.

>

> I talked to her again today and said that I am not satisfied with

this because my symptoms are more than just the muscle cramping.

>

> I asked her to refer me to Cleveland Clinic for another Biopsy.

, Barry's wife, has also recommended a doctor in Michigan so I

am going to call them on Monday.

>

> If anyone else has experienced this kind of Diagnoses (Benign CPK

Syndrome) please let me know because I can't find anything on the

net about it.

>

> Thanks,

>

>

>

>

[Guest guest]

Dear ,

I am truly sorry for your fully understandable frustration. I second

what Mark said. Try to get all of the original slides, et al, and see if

you can get them read by a scientist like the caliber of Shoffner

of Atlanta.

Medicine is an art, as well as a science, and I know, for example, that

even the best radiologists will differ on the interpretation of an

imaging study.

I am sure that pathology must be similar in many ways, especially for

something still rather esoteric, like mito.

I'd rather that you had reported that your doc had said they were not

quite sure....

These episodes have happened to many of us, , so please try to be

patient...yet one more time...and continue the search.

Trust what your body is telling you; no one in the world knows it as you

do.

In the early 90's, after perhaps five+ years of nagging problems, my

endo referred me out to a rheumatologist. I saw him twice, and the two

visits were like a Jeckyll and Hyde experience. The first visit, this

doctor listened well and was kind. (However, I have always wondered why

he stayed in the room while I got dressed, and watched my every move.

After all, I had not complained that I could not button my blouse or

that I needed help with such ordinary small tasks. It unnerved me, but I

never told the endo. Perhaps I should have.)

The next visit he acted agitated throughout, and kept pacing up and down

in the small exam room. He finally put his face very near mine, and

literally started shouting! He said it was all from just stress, etc. I

started to cry, which I had never done before in a doctor's presence,

except when the surgeon told me that my father's cancer was terminal.

I have always since suspected this doctor of substance abuse.

However, in the months that followed, a great peace came over me. I knew

what I knew, I knew that my former energy level had literally

evaporated. I had painful oral lesions that would not go away. I had

falls, and diabetes. I had dry eyes, and bursitis and tendonitis all

over my body. I had started getting variant angina. Plus, many others.

I knew, deep in my heart, and I started not to pin my hopes on any one

docor. They are not gods.

Finally, in 1998, when my hearing started to gallop away, my endo, who

had listened and watched patiently and non-judgmentally all those years,

said I might have mito.

Each person here has a story, and probably one that would be very

familiar to you, . Please be at peace, and keep searching.

Take care.

S.

[Guest guest]

This is very nice, caring post to . It sounds so very familiar to me. I

would cry out of frustration and they would just say that no wonder I had

physical problems if I was that depressed. I would have liked to have them

walk in my shoes for a week.

, please listen to Branda and keep track of things and keep learning.

It took me 15 years to get a diagnosis, so I know the frustration. I now

have a great team of doctors (most not mito docs, but specialists in

specific areas). I hope you time that you will gain this too.

laurie

> From: BDS31@...

> Reply-To:

> Date: Fri, 15 Oct 2004 21:33:31 -0400

> To:

> Subject: Re: Frustration Frustration Frustration

>

> Dear ,

> I am truly sorry for your fully understandable frustration. I second

> what Mark said. Try to get all of the original slides, et al, and see if

> you can get them read by a scientist like the caliber of Shoffner

> of Atlanta.

> Medicine is an art, as well as a science, and I know, for example, that

> even the best radiologists will differ on the interpretation of an

> imaging study.

> I am sure that pathology must be similar in many ways, especially for

> something still rather esoteric, like mito.

>

> I'd rather that you had reported that your doc had said they were not

> quite sure....

>

> These episodes have happened to many of us, , so please try to be

> patient...yet one more time...and continue the search.

> Trust what your body is telling you; no one in the world knows it as you

> do.

>

> In the early 90's, after perhaps five+ years of nagging problems, my

> endo referred me out to a rheumatologist. I saw him twice, and the two

> visits were like a Jeckyll and Hyde experience. The first visit, this

> doctor listened well and was kind. (However, I have always wondered why

> he stayed in the room while I got dressed, and watched my every move.

> After all, I had not complained that I could not button my blouse or

> that I needed help with such ordinary small tasks. It unnerved me, but I

> never told the endo. Perhaps I should have.)

> The next visit he acted agitated throughout, and kept pacing up and down

> in the small exam room. He finally put his face very near mine, and

> literally started shouting! He said it was all from just stress, etc. I

> started to cry, which I had never done before in a doctor's presence,

> except when the surgeon told me that my father's cancer was terminal.

> I have always since suspected this doctor of substance abuse.

>

> However, in the months that followed, a great peace came over me. I knew

> what I knew, I knew that my former energy level had literally

> evaporated. I had painful oral lesions that would not go away. I had

> falls, and diabetes. I had dry eyes, and bursitis and tendonitis all

> over my body. I had started getting variant angina. Plus, many others.

> I knew, deep in my heart, and I started not to pin my hopes on any one

> docor. They are not gods.

> Finally, in 1998, when my hearing started to gallop away, my endo, who

> had listened and watched patiently and non-judgmentally all those years,

> said I might have mito.

> Each person here has a story, and probably one that would be very

> familiar to you, . Please be at peace, and keep searching.

> Take care.

> S.

>

>

>

>

[Guest guest]

Just wanted to let you know that the Michigan doctor is also mine and he is

good at putting clues together, but there is no one here who does the biopsy

testing. He sends his patients to the Cleveland Clinic.

laurie

>

> Reply-To:

> Date: Fri, 15 Oct 2004 17:40:10 -0700 (PDT)

> To:

> Subject: Frustration Frustration Frustration

>

>

>

> Well another road block. My neurologist called yesterday and cancelled my

> appointment for Monday because she said my biopsy came back negative. She

> said I have Benign CPK Syndrome. Whatever that is. She told me that the only

> test that has consistently came back positive was that my CPK levels (muscle

> enzymes) have been continiously elevated.

>

> She doesn't want to run me through anymore tests but says that I need pysical

> therapy again, she wants to put me onto water therapy, and says that there is

> nothing that can be done for the cramps other than put me on a muscle relaxer

> which I am already on.

>

> I talked to her again today and said that I am not satisfied with this because

> my symptoms are more than just the muscle cramping.

>

> I asked her to refer me to Cleveland Clinic for another Biopsy. ,

> Barry's wife, has also recommended a doctor in Michigan so I am going to call

> them on Monday.

>

> If anyone else has experienced this kind of Diagnoses (Benign CPK Syndrome)

> please let me know because I can't find anything on the net about it.

>

> Thanks,

>

>

>

>

[Guest guest]

Hi ,

I am sorry that your biopsy didn't give you more information on your possible

Mito condition. It is always upsetting and sad when we don't find the answers we

are looking for after waiting for so long and reseaching for so long and finally

you think you have the Doctor you need to help diagnosis you, and then the

answers aren't forthcoming. I hurt for you, for I too have been down that rough

and bumpy road. I even took a few years off from searching for anwers, I was so

tired of going from one doc to another and not getting any answers. So I know

what you are feeling right now, and it isn't nice.

, was it you who had the * Needle Biopsy* done? And was it done on your

arm? What did your Neuro say when you asked her to refer you to the Cleveland

Clinic? Did she agree?

The only thing I know about CPK is that very high levels, usually in the

thousands puts Mito patients in the hospital with a Major Mito Crash or Crisis.

I agree with Mark, get all your files together, get the results of the biopsy,

get the slides, and any other information that they just gleaned from your

biopsy and make copies of them, one for you to keep and the other for the next

Doc that you see.

Good luck in your search. If I can be of any help please ask. btw, where do you

live?

Hugs,

Ann-Marie

Frustration Frustration Frustration

Well another road block. My neurologist called yesterday and cancelled my

appointment for Monday because she said my biopsy came back negative. She said

I have Benign CPK Syndrome. Whatever that is. She told me that the only test

that has consistently came back positive was that my CPK levels (muscle enzymes)

have been continiously elevated.

She doesn't want to run me through anymore tests but says that I need pysical

therapy again, she wants to put me onto water therapy, and says that there is

nothing that can be done for the cramps other than put me on a muscle relaxer

which I am already on.

I talked to her again today and said that I am not satisfied with this because

my symptoms are more than just the muscle cramping.

I asked her to refer me to Cleveland Clinic for another Biopsy. ,

Barry's wife, has also recommended a doctor in Michigan so I am going to call

them on Monday.

If anyone else has experienced this kind of Diagnoses (Benign CPK Syndrome)

please let me know because I can't find anything on the net about it.

Thanks,

[Guest guest]

Laurie,

told me that you and Barry go to the same Doctor in Michigan. My neuro is

thinking of sending me to maybe even a place in West Virginia, but said she will

send me somewhere that I want to go. She is going to try to meander me a

consult at Cleveland Clinic but I am not holding my breath because Dr. Cohen

doesn't take adult patients. That is why I thought I would try your Doctor in

Michigan. It is closer than going to West Virginia.

Anyway, for some reason a few posts I found earlier about the CPK didn't post

but I can tell you that I found one that said even if the biopsy didn't show

mito, it can't be ruled out either...meaning it still could be.

My neuro focused on the cramping issue...but she is ignoring what I tell her

about my twitching and jerks and weakness and all that happy stuff.

Oh well, maybe the Rapture will happen soon so we all can go home and get a

better body.

Laureta Fitzgerald lfitzger@...> wrote:

Just wanted to let you know that the Michigan doctor is also mine and he is

good at putting clues together, but there is no one here who does the biopsy

testing. He sends his patients to the Cleveland Clinic.

laurie

>

> Reply-To:

> Date: Fri, 15 Oct 2004 17:40:10 -0700 (PDT)

> To:

> Subject: Frustration Frustration Frustration

>

>

>

> Well another road block. My neurologist called yesterday and cancelled my

> appointment for Monday because she said my biopsy came back negative. She

> said I have Benign CPK Syndrome. Whatever that is. She told me that the only

> test that has consistently came back positive was that my CPK levels (muscle

> enzymes) have been continiously elevated.

>

> She doesn't want to run me through anymore tests but says that I need pysical

> therapy again, she wants to put me onto water therapy, and says that there is

> nothing that can be done for the cramps other than put me on a muscle relaxer

> which I am already on.

>

> I talked to her again today and said that I am not satisfied with this because

> my symptoms are more than just the muscle cramping.

>

> I asked her to refer me to Cleveland Clinic for another Biopsy. ,

> Barry's wife, has also recommended a doctor in Michigan so I am going to call

> them on Monday.

>

> If anyone else has experienced this kind of Diagnoses (Benign CPK Syndrome)

> please let me know because I can't find anything on the net about it.

>

> Thanks,

>

>

>

>

[Guest guest]

,

http://www.mdausa.org/publications/Quest/q71ss-cktest.html

This is MDA's description of CPK/CK. Note that in medical journals,

the term used for this test is now creatine kinase (CK) rather than

creatine phosphokinase (CPK). Many doctors and labs still refer to

this test as CPK (habits change slowly) but the change in terms was

made because what is really being measured is creatine kinase, not

creatine phosphokinase. Thus the scientific powers that be said CK

was a more accurate term for the test. You will find some articles

and sites that use CPK and others that use CK. Both refer to the

same test/enzyme.

You may actually find more information online if you search for

or " elevated creatine kinase " in quotes or " elevated creatine

phosphokinase " in quotes. Also try searching on rhabdomyolysis, as

this is the medical term for the condition caused by elevated CK or

CPK.

As I mentioned before, exercise in healthy persons does cause a

temporary elevation of CPK or CK. This is normal and benign. But

elevated CPK or CK can have many causes that are not benign.

We have a lot of information about CK and rhabdomyolysis on our CPT

deficiency site because it is one of many disorders that can cause

an elevated CK. Here are two pages for starters. At the bottom of

each are links to comprehensive articles on rhabdomyolysis, causes,

treatments, etc.

http://www.spiralnotebook.org/anatomyofanattack/index.html

http://www.spiralnotebook.org/rhabdomyolysis/index.html

Barbara

> >

> >

> > Well another road block. My neurologist called yesterday and

> cancelled my appointment for Monday because she said my biopsy

came

> back negative. She said I have Benign CPK Syndrome. Whatever

that

> is. She told me that the only test that has consistently came

back

> positive was that my CPK levels (muscle enzymes) have been

> continiously elevated.

> >

> > She doesn't want to run me through anymore tests but says that I

> need pysical therapy again, she wants to put me onto water

therapy,

> and says that there is nothing that can be done for the cramps

other

> than put me on a muscle relaxer which I am already on.

> >

> > I talked to her again today and said that I am not satisfied

with

> this because my symptoms are more than just the muscle cramping.

> >

> > I asked her to refer me to Cleveland Clinic for another Biopsy.

> , Barry's wife, has also recommended a doctor in Michigan so

I

> am going to call them on Monday.

> >

> > If anyone else has experienced this kind of Diagnoses (Benign

CPK

> Syndrome) please let me know because I can't find anything on the

> net about it.

> >

> > Thanks,

> >

> >

> >

> >