atlanta's troubles fact or fiction?

July 26, 1999

I just read the email posted that was supose to clear about the " rumors "

about Dr Shoffner's office in Atlanta and I have had a totally different

experience then the one described. My son was referred to ish

Rites and Dr Shoffner about 4 months ago. We live in Melbourne Florida and

our local Neurologist Dr ph Cimino, who has referred over 20 patients to

the clinic, sent off 's medical history and a request for an appt

months ago. He was NOT notifeid by the Doctor or Clinic that they are not

scheduling new appts and so he faxed a detailed report and medical

information off expecting us to get a timely appt. He was extremely

frustrated when I notifed him that we were unable to get an appt set up. The

clinic asked his office to send the required medical info and the standard

cover letter explaining why he wanted to be seen. That was done as

requested by Atlanta. Then we were told to have the Insurance contact

Atlanta for information about the biopsy and appt. Janice did NOT return any

calls to my son's case manager nor did she return calls that my husband and

I left on her vioce mail. We also were given the run around about calling "

next week for an appt " for weeks at a time! In the mean time I was actively

persuing the Insuracne Co to get the preapproval necessary to " schedule " an

appt with Dr Shoffner. We had to have a medical review board go over all of

's medical info in order to get the authorization needed to be sent out

of state to Atlanta. I can tell you that while all this was going on we were

NEVER informed that Dr Shoffner is " no longer actually seeing

patients----- " he is behind the seens and does not see patients himself any

longer " --this I was FINALLY told by Janice when I pushed for a reason that we

were unable to set up an appt after almost 4 months. She then told me that Dr

Kreviacki ( spelling? ) will be now doing the patient care and set up for

biopsy. Dr Cimino's office told me that even they weren't given the

professional courtesty of being notified of the trouble there. I was

extremely unhappy with the treatment we were given by the staff in Atlanta .

As all of you can understand, having a kid with a Mito disorder. on a g-tube,

with multiple handicapping conditons is hard enough but to be mislead by such

" reputable clinic " is frustrating beyond belief. has undergone

multiple tests, and seen a slew of specialists and we were hoping that

Atlanta would be able to give us the final answers that we have been

searching for after 10+ months for ous son. I can tell you that I was able to

make one phone call to Dr Cohen's in Cleveland and Iwas given an appt over

the phone for 3 weeks from now without any run around or misrepensation of

the clinic's staff. I was treated with respect , phone calls were answered

promptly and 's health was Paramount to all concerned. If this is the

so called " rumors " that Janice feels have been posted then I will tell you

myself this is NOT rumor it is FACT!!!!

Golden, mom to Jermey 10 months

July 27, 1999

Chrissy,

There was no experience described, so I'm unsure what you are referring to.

However, the rumors were that a: testing would not be completed on samples

that already been collected, and b: that ish Rite was no longer going

to be scheduling mito patients at all - that's all I was referring to.

Janice was just concerned that people who had already been seen were hearing

that their samples weren't going to be tested, which is just simply not

true.

Personally I have heard at least 50 stories about how great ish Rite

has been and only 1 negative story, so I'm inclined to go with the

percentages. I would recommend ish Rite to everybody I know based on

our experience and the other experiences I have heard. When my son was seen

there it took many months to get the records reviewed, the insurance

approval, the appointment scheduled, travel arrangements made, etc... and I

don't think it was unreasonable. But my son became symptomatic at 18 months

and we didn't get a diagnosis until he was 5.5, so maybe I was just a little

more used to waiting considering the ordeals we had already been through

trying to get a diagnosis.

Is it possible that you were just expecting more than was reasonable or

possible? Did anyone ever actually make any assurances to you or the

doctors that the records would be reviewed immediately or that an

appointment would be scheduled immediately? Were you ever actually told by

anybody from their office that you would see Dr. Shoffner personally or just

basing that assumption on things you had heard from others who had been

before? I personally don't think it's unreasonable that they didn't

personally call you or your doctor considering what a small office they have

and what a demand there is for their services right now. I understand that

it's frustrating, but it doesn't sound unreasonable to me.

From the time I first contacted ish Rite and sent them medical records

it was about 5 months until we were actually seen. It may seem like a long

time, but when you consider that mitochondrial medicine is still in it's

infancy and ish Rite is one of the very few places that does fresh

muscle biopsies, it really is understandable. Additionally, we saw

Dr.Shoffner at a time when his office was much less busy so I can easily see

how that 5 months might be much more now.

Unfortunately you were trying to schedule an appointment during a time when

they were unable to schedule appointments which likely added to your

frustration, but it was something that couldn't be helped and I don't think

it should be considered a common occurrence or a personal slight. I'm not

trying to minimize your frustration and I do understand how frustrating all

of this can be.

Knowing Janice as well as I do, I'm also sure it has also been frustrating

for her to have to be so vague during this time that they have been unable

to schedule appointments, but sometimes we just have to do our job,

regardless of how difficult it may be.

Terri

> >From: ChrissyGE@...

> >

> >I just read the email posted that was supose to clear about the " rumors "

> >about Dr Shoffner's office in Atlanta and I have had a totally different

> >experience then the one described.

>

>_______________________________________________________________

>Get Free Email and Do More On The Web. Visit http://www.msn.com

July 27, 1999

,

I don't know about Dr. Shoffner's office, but I do know that I called Dr.

Cohen's office and I too had an appt. within 3 weeks and they are great about

returning calls- even Dr. Cohen himself. They are really kind and

considerate- compassionate would be a good word. What day is your appt? I

have mine for August 9th at 1:00.

July 27, 1999

Chrissy,

I guess I'm a little confused as to why you think that message about the

rumors was specifically directed at you. Until today I didn't even know you

since you just subscribed to the list (evidently to respond to that specific

message) and my message was only about two specific things - neither of

which seem to have anything to do with your experience.

Yes I do consider Janice a personal friend, but I don't see why that's

relevant. All she asked me to do was clear up the rumors because she didn't

want people who had already been seen, worrying about whether their tests

would be completed. Unless you were the person who started that rumor

(which I doubt since it's not relevant to your experience) the two subjects

(your experience and my post about the rumors) seem completely unrelated.

You are certainly free to express your opinion, but you seem to be taking my

message about the rumors as being directed at you, and that is certainly not

the case. Since you brought up your experience, I was just sharing mine as

well and giving my perspective (not Janice's) on the situtation. If

somebody had said something negative about UCSD that might deter others from

seeking treatment there, I would also share the fact that I had heard about

many good experiences there so they might be able to get a broader picture

and wouldn't base there decision on the experience of only one person.

Respectfully,

Terri

>You stated that you and Janice are personal friends. I imagine that my

>disappointment in a clinic I had only heard good things about, afterall why

>would I have been trying so hard to have my son seen if I felt

>differeently,

>may not be as clear to you as someone who is a little more impartial and

>not

>personally involved . I have never had any " gripe " with Janice although I

>can

>tell you that not returning phone calls and misleading potential clients is

>not a favorable trait in my book. If she feels that anything I have told

>you

>is untrue then I will be more than happy to supply my phone number, my

>husband's work number as he tried to get a date out of her also, as well as

>our son's case manager who felt that the " unprofessional " manner in which

>she

>was treated was totally uncalled for as well as hurtful to my son's health.

> Golden

>

July 27, 1999

,

I am so glad that you have had a similar experience with Dr Cohen's office.

We live in Florida and will fly into Cleveland on August 10th. sees

Dr Cohen on the 11th and has the fresh biopsy scheduled for the 12th. Maybe

we will get to meet

July 28, 1999

Terri,

It seems to me that there is some kind of communication problem going on

within the Mito Community. When I posted comments about my experience in

Atlanta I was simply doing just-----posting MY experience not anyone elses.

We were referred to the clinic by our Neurologist and when he saw my son for

a follow-up appt and I reported that since 's last appt we were not

able to even set an appt for Atlanta he suggested we go else where. This is

just was what we did. I feel that had the clinic been more up front about

scheduling there would have never been any problem, but they weren't and my

son has suffered. Maybe we should all try to remember that he is what is

important here and not who said what and who had what experience. As for

responding to the post about rumors in Atlanta I did feel that was being

directed towards those of us who have negative comments about the Atlanta

clinic. I am totally aware of their reputation and the importance of Dr

Shoffner's work. We desperately wanted to see him and get his advice on my

son's medical care but unfortuntately we do not have all the time in the

world to wait for the clinic to work out the kinks and then give us an appt.

Who knows how many patients might have been ahead of if we were

waiting 4 months just to MAKE an appt. I was under the assumption that this

list was for us to help each other in the fight against Mito disease and this

is why I subscribed , contrary to your comments. If a list subscriber can not

freely express their feelings or experiences then the list is not serving

it's subscribers as it should. Afterall, all this nonsense is a waste of

cyberspace and my son's care is the most important thing to me not who said

what or to whom. I hope that this can be put to rest once in for all. I have

been reading all the posts with great interest and I hope to learn all I can

from Your experiences- even if I may not agree with all I read I will

remember that we all are different and are allowed our own opinions and

comments.

July 28, 1999

,

I personally don't see what the big deal is here. posted an

opinion and some other people posted theirs as well. I didn't see any

childish games (other than the suggestions that this type of discussion is

inappropriate or everything is directed at them personally).

I have not seen anybody jump all over you or at ANY time on this

list. I have seen people, with different opinions, show respect for the

original poster and their experience, and then tell about their experience.

If all of those other experiences had been identical to the original would

it still be " jumping all over " them???

If I was new to this list and saw 's post about Shoffner, or your

previous post about Cohen, and then nobody else said anything - that would

be the only information I would have on which to base my decision. It's

just a discussion. Nobody has attacked anybody. Aren't we being just a

little bit paranoid here???? And now because Carl and I spent last

Thanksgiving with and her family we are a good ol girls club? That's

just stupid. Yes , let's DO grow up.

Nevermind, I'm going back to lurking.

Terri

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: FW: atlanta's troubles fact or fiction?

>Date: Wed, 28 Jul 1999 08:07:12 -0700

>

>Everyone on this list,

>This is really ridiculous. We are supposed to be grown people here on this

>list looking for help and support for very sick family members. Yet this is

>about the 3rd time I have seen this same scenario played out.

>Let's all be honest about it. There are some childish games being played

>here by adults. This is the way the game is played:

>1. someone posts something negative about some experience with a well known

>and usually liked and respected medical person or place.

>2. A number of people on the list jump in to tell how perfectly wonderful

>that person or place is-PURPOSELY implying that the previous person doesn't

>have a leg to stand on as suddenly a whole group of people can testify how

>wrong they are to see it so negatively. And in other words, it must be

>their

>own fault if THEY had a negative experience as the REST of us did just

>fine.

>3. If the original stater of negative opinion feels strong enough to stick

>up for themselves, they respond back with the question of why are you all

>picking on me for stating my opinion?

>4. Then you all throw back in that person's face that she must be just

>being

>paranoid as none of your comments were directed to them-my goodness,

>whereever did you get THAT impression? (It's pretty obvious however-a

>complete outside fool could see the chain of events) That is supposed to

>make the person feel small enough to finish them off and they will crawl

>away in silence making you the winner!

>

>What the heck is this all about? This was also done to me. A number of you

>on this list have actually been able to meet each other personally, talk on

>the phone, or email privately back and forth and you have formed a good ole

>girls club.

>Now what this has to do with the supposed real purposes of this group, who

>knows. But I, for one, am sick of it. And I think it should be stopped.

>No, I am not going to quit the group as it serves a purpose I need and so

>do

>many others. And only a handful of you play this game but it is enough to

>make life miserable for others. I would sincerily appreciate it if this

>particular game would be dropped. DON'T bother to write back how paranoid I

>am or how innocent those of you are who have played this game. You know

>what

>I am talking about.

>Yes, Chrissy had a legitimate point and it was good she had this group to

>express her feelings of frustration and dissapointment. Yes, the " oh, you

>are so wrong, Shoffner's office and he and Janice are wonderful " , comments

>WERE directed specifically at her to negate her negative experience. She,

>you, and I know that. So get off her back, welcome her to the group, and

>let's grow up here. No matter how nicely you word that sort of garbage you

>do to others it is still childish garbage. S.

July 28, 1999

Again, new people join this list every day and have not necessarily seen the

past discussions.

I very rarely post on the list, but if you choose to think I was playing

some game when I gave you information about OHSU, CDRC, the

-Lemli-Opitz expert at OHSU or peripheral neuropathy - either privately

or on the list, then don't worry, I won't correspond with you any further.

Problem solved.

Terri

July 28, 1999

,

<non-sarcastic part of message>

I know that you were expressly forbidden to talk about the Atlanta subject

on the MON list, but I don't think that means you should feel free to abuse

the open policy of this list by being rude and insulting to those members

who choose to give their time and knowledge in support of other list

members.

I am so glad that you are perfect and able to sit in judgement of the rest

of us.

Terri

>From: ChrissyGE@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: FW: atlanta's troubles fact or fiction?

>Date: Wed, 28 Jul 1999 13:47:35 EDT

>

>From: ChrissyGE@...

>

>Terri,

>

>I am new to the list and I can tell you that with all the lists I subscribe

>to and the groups I help support you ladies must haev too much time on your

>hands to care so much about my little opinion. I am involved in many

>activities that are attempting to raise money to help fight the Mito

>diseases

>that this list represents, maybe you should get out from behind your

>computer

>and do something positive instead of hurling insults you try to cover with

>sarcasm. Again this is just MY OPNION for what is is worth.

>

July 28, 1999

,

<non-sarcastic part of message>

I know that you were expressly forbidden to talk about the Atlanta subject

on the MON list, but I don't think that means you should feel free to abuse

the open policy of this list by being rude and insulting to those members

who choose to give their time and knowledge in support of other list

members.

I am so glad that you are perfect and able to sit in judgement of the rest

of us.

Terri

>From: ChrissyGE@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: FW: atlanta's troubles fact or fiction?

>Date: Wed, 28 Jul 1999 13:47:35 EDT

>

>From: ChrissyGE@...

>

>Terri,

>

>I am new to the list and I can tell you that with all the lists I subscribe

>to and the groups I help support you ladies must haev too much time on your

>hands to care so much about my little opinion. I am involved in many

>activities that are attempting to raise money to help fight the Mito

>diseases

>that this list represents, maybe you should get out from behind your

>computer

>and do something positive instead of hurling insults you try to cover with

>sarcasm. Again this is just MY OPNION for what is is worth.

>

July 28, 1999

,

Thank You.

July 28, 1999

Terri,

I am new to the list and I can tell you that with all the lists I subscribe

to and the groups I help support you ladies must haev too much time on your

hands to care so much about my little opinion. I am involved in many

activities that are attempting to raise money to help fight the Mito diseases

that this list represents, maybe you should get out from behind your computer

and do something positive instead of hurling insults you try to cover with

sarcasm. Again this is just MY OPNION for what is is worth.

July 28, 1999

Everyone on this list,

This is really ridiculous. We are supposed to be grown people here on this

list looking for help and support for very sick family members. Yet this is

about the 3rd time I have seen this same scenario played out.

Let's all be honest about it. There are some childish games being played

here by adults. This is the way the game is played:

1. someone posts something negative about some experience with a well known

and usually liked and respected medical person or place.

2. A number of people on the list jump in to tell how perfectly wonderful

that person or place is-PURPOSELY implying that the previous person doesn't

have a leg to stand on as suddenly a whole group of people can testify how

wrong they are to see it so negatively. And in other words, it must be their

own fault if THEY had a negative experience as the REST of us did just fine.

3. If the original stater of negative opinion feels strong enough to stick

up for themselves, they respond back with the question of why are you all

picking on me for stating my opinion?

4. Then you all throw back in that person's face that she must be just being

paranoid as none of your comments were directed to them-my goodness,

whereever did you get THAT impression? (It's pretty obvious however-a

complete outside fool could see the chain of events) That is supposed to

make the person feel small enough to finish them off and they will crawl

away in silence making you the winner!

What the heck is this all about? This was also done to me. A number of you

on this list have actually been able to meet each other personally, talk on

the phone, or email privately back and forth and you have formed a good ole

girls club.

Now what this has to do with the supposed real purposes of this group, who

knows. But I, for one, am sick of it. And I think it should be stopped.

No, I am not going to quit the group as it serves a purpose I need and so do

many others. And only a handful of you play this game but it is enough to

make life miserable for others. I would sincerily appreciate it if this

particular game would be dropped. DON'T bother to write back how paranoid I

am or how innocent those of you are who have played this game. You know what

I am talking about.

Yes, Chrissy had a legitimate point and it was good she had this group to

express her feelings of frustration and dissapointment. Yes, the " oh, you

are so wrong, Shoffner's office and he and Janice are wonderful " , comments