fresh muscle biopsy in california

February 16, 2005

Hi everyone

I am just wondering if anyone has had a fresh muscle biopsy in

California? If so with whom and where?

We are in California and the doctors want my 3 yr old Taryn to have

one but I am wondering if they are ever done here much or if we need

to go to Atlanta or Cleveland to have it done by someone who knows

what they are doing.

Please help!

Debbie

mother to Taryn

www.caringbridge.org/ca/taryn

February 23, 2005

Hi, Where are you in California? We live in Camarillo, 1 hour NW of LA. We

saw Dr. Bruce Barshop in San Diego last summer. He was okay, but not very

informative. We got the fresh muscle bio in Atlanta with Dr. Shoffner.

I've heard that people have gotten differing results when they have gotten a

repeat muscle biopsy in San Diego after getting one in Atlanta! That would

be frustrating. We are content with the diagnosis and will not be repeating

it.

Lori, Christian (8, mood disorder, probable ADD) and (5, mito,

complex I and IV, reflux, severe MR, non-walker so far, and non-talker)

fresh muscle biopsy in california

>

> Hi everyone

> I am just wondering if anyone has had a fresh muscle biopsy in

> California? If so with whom and where?

> We are in California and the doctors want my 3 yr old Taryn to have

> one but I am wondering if they are ever done here much or if we need

> to go to Atlanta or Cleveland to have it done by someone who knows

> what they are doing.

> Please help!

> Debbie

> mother to Taryn

> www.caringbridge.org/ca/taryn

>

> Please contact mito-owner with any problems or questions.

>

February 23, 2005

There is a great mito doc in San Diego. Dr. Haas, Dept. of Pediatric Neurology, at the University of California. I don't know if they do fresh muscle biopsies there, but I would definitely think so. He's a really big expert in the field.

Hope this helps.

Donna

mother to Craig (8 year old with unspecified mito)

fresh muscle biopsy in california

Hi everyoneI am just wondering if anyone has had a fresh muscle biopsy in California? If so with whom and where?We are in California and the doctors want my 3 yr old Taryn to have one but I am wondering if they are ever done here much or if we need to go to Atlanta or Cleveland to have it done by someone who knows what they are doing.Please help!Debbiemother to Tarynwww.caringbridge.org/ca/tarynPlease contact mito-owner with any problems or questions.

February 23, 2005

-Hi Lori

Thanks for your reply. At this point Taryn, my 3 yr old daughter

which has a possible mito disorder, does go to Dr. Bruce Barshop and

Dr. Haas. A few months ago they were talking in the room with us and

said to each other that they would like to see Taryn get a muscle

biopsy done in Cleveland when the weather got better, spring or so.

Then Taryn had an appt Feb 1st for more tests, urine, blood ect and

Dr. Barshop said that he would like to get another MRI done and a

muscle biopsy done there at UCSD and said something to the effect

that they are getting more experienced at them in San Diego now. I

dont want Taryn to be a guinne pig. Even though they dont know all

that much as to what is going on with her, they said she is work in

progress, but I have a wierd feeling about doing it there. I could

be totally wrong but why suggest it to be somewhere else 3 months

prior? makes me wonder. Thats why I asked. We are in Corona

California. How were you able to go to Atlanta for your muscle

biopsy.? did your insurance pay for that? we have insurance (HMO)

plus medi-cal (DDS waiver). So I understand that if your insurance

doesnt OK you to go to another state, you can try and put it through

medi cal. who knows.

Thanks for your input

www.caringbridge.org/ca/taryn

Debbie

-- In Mito , " Lori Cutillo " <lfcutillo@a...> wrote:

> Hi, Where are you in California? We live in Camarillo, 1 hour NW

of LA. We

> saw Dr. Bruce Barshop in San Diego last summer. He was okay, but

not very

> informative. We got the fresh muscle bio in Atlanta with Dr.

Shoffner.

> I've heard that people have gotten differing results when they

have gotten a

> repeat muscle biopsy in San Diego after getting one in Atlanta!

That would

> be frustrating. We are content with the diagnosis and will not be

repeating

> it.

>

> Lori, Christian (8, mood disorder, probable ADD) and (5,

mito,

> complex I and IV, reflux, severe MR, non-walker so far, and non-

talker)

> fresh muscle biopsy in california

>

> >

> > Hi everyone

> > I am just wondering if anyone has had a fresh muscle biopsy in

> > California? If so with whom and where?

> > We are in California and the doctors want my 3 yr old Taryn to

have

> > one but I am wondering if they are ever done here much or if we

need

> > to go to Atlanta or Cleveland to have it done by someone who

knows

> > what they are doing.

> > Please help!

> > Debbie

> > mother to Taryn

> > www.caringbridge.org/ca/taryn

> >

> > Please contact mito-owner with any problems or

questions.

> >

February 24, 2005

Hey, I think I would feel the same way about San Diego. I certainly was

not overwhelmed by them when I was there. 's muscle biopsy showed

severe complex deficiencies (0 in complex I for example). Yet, Bruce

Barshop raised the question whether Atlanta had made an error and he didn't

have mito??? This frustrated me as he does fit the clinical picture of mito

and Dr. Shoffner was sure even before the muscle biopsy!

We were living in Chicago at the time that we went to Atlanta. We had an

HMO--Aetna, I believe. They paid for almost all of it. We arranged for it

to be approved in advance with help from Dr. Shoffner's staff. His

assistant at the time, Janice, had worked with Aetna before, and knew who to

contact. I was impressed with Shoffner and would go back there if

necessary.

Good luck, Lori

fresh muscle biopsy in california

>>

>> >

>> > Hi everyone

>> > I am just wondering if anyone has had a fresh muscle biopsy in

>> > California? If so with whom and where?

>> > We are in California and the doctors want my 3 yr old Taryn to

> have

>> > one but I am wondering if they are ever done here much or if we

> need

>> > to go to Atlanta or Cleveland to have it done by someone who

> knows

>> > what they are doing.

>> > Please help!

>> > Debbie

>> > mother to Taryn

>> > www.caringbridge.org/ca/taryn

>> >

>> > Please contact mito-owner with any problems or

> questions.

>> >

February 24, 2005

We had a similar experience in san diego, we went there and they said

that there was no way that our family had mito and they spent lots of

insurance money testing for rare diseases that all came back negative

and still refused to accept a mito diagnosis despite several other

experts saying it was. I left there and went elsewhere and had two

muscle biopsies done ( one on me and one on my daughter) both muscle

biopsies confirmed mito. We saw Barshop and nyhan at UCSD and never

would I go back there.

>

> >

> > -Hi Lori

> > Thanks for your reply. At this point Taryn, my 3 yr old daughter

> > which has a possible mito disorder, does go to Dr. Bruce Barshop

and

> > Dr. Haas. A few months ago they were talking in the room with us

and

> > said to each other that they would like to see Taryn get a muscle

> > biopsy done in Cleveland when the weather got better, spring or

so.

> > Then Taryn had an appt Feb 1st for more tests, urine, blood ect

and

> > Dr. Barshop said that he would like to get another MRI done and a

> > muscle biopsy done there at UCSD and said something to the effect

> > that they are getting more experienced at them in San Diego now. I

> > dont want Taryn to be a guinne pig. Even though they dont know all

> > that much as to what is going on with her, they said she is work

in

> > progress, but I have a wierd feeling about doing it there. I could

> > be totally wrong but why suggest it to be somewhere else 3 months

> > prior? makes me wonder. Thats why I asked. We are in Corona

> > California. How were you able to go to Atlanta for your muscle

> > biopsy.? did your insurance pay for that? we have insurance (HMO)

> > plus medi-cal (DDS waiver). So I understand that if your insurance

> > doesnt OK you to go to another state, you can try and put it

through

> > medi cal. who knows.

> > Thanks for your input

> > www.caringbridge.org/ca/taryn

> >

> > Debbie

> >

> > -- In Mito , " Lori Cutillo " <lfcutillo@a...> wrote:

> >> Hi, Where are you in California? We live in Camarillo, 1 hour NW

> > of LA. We

> >> saw Dr. Bruce Barshop in San Diego last summer. He was okay,

but

> > not very

> >> informative. We got the fresh muscle bio in Atlanta with Dr.

> > Shoffner.

> >> I've heard that people have gotten differing results when they

> > have gotten a

> >> repeat muscle biopsy in San Diego after getting one in Atlanta!

> > That would

> >> be frustrating. We are content with the diagnosis and will not

be

> > repeating

> >> it.

> >>

> >> Lori, Christian (8, mood disorder, probable ADD) and (5,

> > mito,

> >> complex I and IV, reflux, severe MR, non-walker so far, and non-

> > talker)

> >> fresh muscle biopsy in california

> >>

> >> >

> >> > Hi everyone

> >> > I am just wondering if anyone has had a fresh muscle biopsy in

> >> > California? If so with whom and where?

> >> > We are in California and the doctors want my 3 yr old Taryn to

> > have

> >> > one but I am wondering if they are ever done here much or if we

> > need

> >> > to go to Atlanta or Cleveland to have it done by someone who

> > knows

> >> > what they are doing.

> >> > Please help!

> >> > Debbie

> >> > mother to Taryn

> >> > www.caringbridge.org/ca/taryn

> >> >

> >> > Please contact mito-owner with any problems or

> > questions.

> >> >

February 24, 2005

-Hi Donna

Thanks for the input. We do take my 3 yr old daughter Taryn to Dr.

Haas and Dr. Barshop in SanDiego. We were there a few months ago and

they were discussing Taryn getting a fresh muscle biopsy done at

Cleveland , when the weather warmed up. Then we were there Feb 1st

and Dr. Barshop said he would like to see Taryn get a muscle biopsy

at UCSD because they seemed to be doing better at them or something

to that effect. That didnt sound to impressive to me. What is going

on with Taryn is very complicated and confusing so I kind of

hesitant on the muscle biopsy there with what was said between the

two doctors?????? So thats why i asked the mito board ..possibly

someone else has had one done there. Seems to me if there is a way

for us to get to Cleveland with Dr. Cohen or Atlanta with Dr.

Shoffner that would be a better route.

Then I got a e-mail yesterday from Dr. Barshops coordinator saying

that he thinks he wants to wait all together now...unless we want to

have other children (which we dont...we have 4 ) or want to know the

specific mito diagnosis (which I do) ..there might not even be a

reason to do the procedure. Geez louise. Lord know I dont want to

put my daughter through any more than she has to but I also want to

try and find answers.

The coordinator also said " after its all done you may not find an

answer anyway because mito is so hard to figure out. "

So thats our deliema.

www caringbridge.org/ca/taryn

Take care

Debbie (mother of Taryn, possible mito

-- In Mito , " Donna " <donnamichele@c...> wrote:

> There is a great mito doc in San Diego. Dr. Haas, Dept.

of Pediatric Neurology, at the University of California. I don't

know if they do fresh muscle biopsies there, but I would definitely

think so. He's a really big expert in the field.

>

> Hope this helps.

>

> Donna

> mother to Craig (8 year old with unspecified mito)

> fresh muscle biopsy in california

>

> Hi everyone

> I am just wondering if anyone has had a fresh muscle biopsy in

> California? If so with whom and where?

> We are in California and the doctors want my 3 yr old Taryn to

have

> one but I am wondering if they are ever done here much or if we

need

> to go to Atlanta or Cleveland to have it done by someone who

knows

> what they are doing.

> Please help!

> Debbie

> mother to Taryn

> www.caringbridge.org/ca/taryn

>

> Please contact mito-owner with any problems or

questions.

>

> -------------------------------------------------------------------

-----------

>

February 24, 2005

-Wow interesting. We have seen Dr. Nyhan, Dr. Levine, Dr. Barshop,

and Dr. Haas. And havent been all that impressed. Last appointment

my husband didnt even go to (we have a 15 month old that gets very

impatient after waiting for hours for the doctors to come in, so my

husband stayed home with her) But he sure didnt miss anything, It

was the same old thing. I ask a ton of questions and they have no

answers.

Who do you go to know? Did you guys have a muscle biopsy done? Did

you get any sort of diagnosis?

www.caringbridge.org/ca/taryn

Debbie (mother of Taryn , 3yrs possible mito)

-- In Mito , " mitomomx3 " <MitomomX3@a...> wrote:

>

> We had a similar experience in san diego, we went there and they

said

> that there was no way that our family had mito and they spent lots

of

> insurance money testing for rare diseases that all came back

negative

> and still refused to accept a mito diagnosis despite several other

> experts saying it was. I left there and went elsewhere and had two

> muscle biopsies done ( one on me and one on my daughter) both

muscle

> biopsies confirmed mito. We saw Barshop and nyhan at UCSD and

never

> would I go back there.

>

> >

> > >

> > > -Hi Lori

> > > Thanks for your reply. At this point Taryn, my 3 yr old

daughter

> > > which has a possible mito disorder, does go to Dr. Bruce

Barshop

> and

> > > Dr. Haas. A few months ago they were talking in the room with

us

> and

> > > said to each other that they would like to see Taryn get a

muscle

> > > biopsy done in Cleveland when the weather got better, spring

or

> so.

> > > Then Taryn had an appt Feb 1st for more tests, urine, blood

ect

> and

> > > Dr. Barshop said that he would like to get another MRI done

and a

> > > muscle biopsy done there at UCSD and said something to the

effect

> > > that they are getting more experienced at them in San Diego

now. I

> > > dont want Taryn to be a guinne pig. Even though they dont know

all

> > > that much as to what is going on with her, they said she is

work

> in

> > > progress, but I have a wierd feeling about doing it there. I

could

> > > be totally wrong but why suggest it to be somewhere else 3

months

> > > prior? makes me wonder. Thats why I asked. We are in Corona

> > > California. How were you able to go to Atlanta for your muscle

> > > biopsy.? did your insurance pay for that? we have insurance

(HMO)

> > > plus medi-cal (DDS waiver). So I understand that if your

insurance

> > > doesnt OK you to go to another state, you can try and put it

> through

> > > medi cal. who knows.

> > > Thanks for your input

> > > www.caringbridge.org/ca/taryn

> > >

> > > Debbie

> > >

> > > -- In Mito , " Lori Cutillo " <lfcutillo@a...>

wrote:

> > >> Hi, Where are you in California? We live in Camarillo, 1

hour NW

> > > of LA. We

> > >> saw Dr. Bruce Barshop in San Diego last summer. He was

okay,

> but

> > > not very

> > >> informative. We got the fresh muscle bio in Atlanta with Dr.

> > > Shoffner.

> > >> I've heard that people have gotten differing results when they

> > > have gotten a

> > >> repeat muscle biopsy in San Diego after getting one in

Atlanta!

> > > That would

> > >> be frustrating. We are content with the diagnosis and will

not

> be

> > > repeating

> > >> it.

> > >>

> > >> Lori, Christian (8, mood disorder, probable ADD) and

(5,

> > > mito,

> > >> complex I and IV, reflux, severe MR, non-walker so far, and

non-

> > > talker)

> > >> fresh muscle biopsy in california

> > >>

> > >> >

> > >> > Hi everyone

> > >> > I am just wondering if anyone has had a fresh muscle biopsy

in

> > >> > California? If so with whom and where?

> > >> > We are in California and the doctors want my 3 yr old Taryn

to

> > > have

> > >> > one but I am wondering if they are ever done here much or

if we

> > > need

> > >> > to go to Atlanta or Cleveland to have it done by someone who

> > > knows

> > >> > what they are doing.

> > >> > Please help!

> > >> > Debbie

> > >> > mother to Taryn

> > >> > www.caringbridge.org/ca/taryn

> > >> >

> > >> > Please contact mito-owner with any problems

or

> > > questions.

> > >> >

February 24, 2005

Hi Debbie-

I can really undersand your dilemma. Dr. Cohen did not encourage us to have the muscle biopsy because of the chance that it might not produce any answers and the risks involved in putting a mito child under anesthesia. It's such a difficult decision when your child has been through so many pokes and prods already. If it weren't for going ahead with it, though, we would not have really known for sure that he had mito disease. So it was worth it for us.

I have such deep respect for Dr. Cohen. He was the first doctor to respond to me as if I knew what I was talking about and to take all my concerns seriously. He also is so good at speaking in laymen's terms.

God's grace to you as you make your decision.

Donna

fresh muscle biopsy in california> > > > > Hi everyone> I am just wondering if anyone has had a fresh muscle biopsy in > California? If so with whom and where?> We are in California and the doctors want my 3 yr old Taryn to have > one but I am wondering if they are ever done here much or if we need > to go to Atlanta or Cleveland to have it done by someone who knows > what they are doing.> Please help!> Debbie> mother to Taryn> www.caringbridge.org/ca/taryn> > > > > > > > > Please contact mito-owner with any problems or questions. > > > > ------------------------------------------------------------------------------>

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