Re: ? About Appt with Cohen

[Guest guest]

Hi ,

>They say that he hasn't opened his

>books for July on yet and so we are on a list for when they

>open.....has anyone ever heard this before and DO THEY REALLY

>CALL???

It's true that some doctors don't schedule that far ahead because they

don't know what their availability is yet--that is, they're still

establishing when they need to be away at conferences, on vacation,

whatever.

Will Cleveland call? Probably, but they're not the most organized place

I've ever dealt with, so what I try to do is ask when they will start

scheduling for a certain month, and if I don't hear from them pretty soon

after that, I go ahead and call.

Hope this helps. Good luck deciding what to do.

-- Mom to:

Emilie (16), mito--complex IV, cp, ld

Kaitlin (16), cp, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Hi ,

>They say that he hasn't opened his

>books for July on yet and so we are on a list for when they

>open.....has anyone ever heard this before and DO THEY REALLY

>CALL???

It's true that some doctors don't schedule that far ahead because they

don't know what their availability is yet--that is, they're still

establishing when they need to be away at conferences, on vacation,

whatever.

Will Cleveland call? Probably, but they're not the most organized place

I've ever dealt with, so what I try to do is ask when they will start

scheduling for a certain month, and if I don't hear from them pretty soon

after that, I go ahead and call.

Hope this helps. Good luck deciding what to do.

-- Mom to:

Emilie (16), mito--complex IV, cp, ld

Kaitlin (16), cp, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Hi ,

>They say that he hasn't opened his

>books for July on yet and so we are on a list for when they

>open.....has anyone ever heard this before and DO THEY REALLY

>CALL???

It's true that some doctors don't schedule that far ahead because they

don't know what their availability is yet--that is, they're still

establishing when they need to be away at conferences, on vacation,

whatever.

Will Cleveland call? Probably, but they're not the most organized place

I've ever dealt with, so what I try to do is ask when they will start

scheduling for a certain month, and if I don't hear from them pretty soon

after that, I go ahead and call.

Hope this helps. Good luck deciding what to do.

-- Mom to:

Emilie (16), mito--complex IV, cp, ld

Kaitlin (16), cp, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

They really will call. At least they did for us. He has said that he

wants to see us back in three months and the first available sometimes

is four to five months but they do call. They also will call if you

get put on the cancelation list. His scheduling staff is different

than his office staff. The office staff you need to keep on top of if

you request something.We have called numerous times for prescription

refills and have heard nothing for days and when we call back to nag

then it's done right away.Good luck. If it makes you feel better just

keep calling.Maybe they'll get sick of hearing from you and just

schedule you so you won't call anymore.

Dawn Myers

Mom to

[Guest guest]

...

I think with Shoffner once your insurance stuff is a go with Shoffner, they can get you there really quick...another plus in my eyes is, he will do the biopsy on that trip instead of requiring a return trip like Cohen does. When we saw him last year, it was only 10 days from the time we had the money (we had to raise funds--did it in two weeks) until they could see us...

deb

[Guest guest]

...

I think with Shoffner once your insurance stuff is a go with Shoffner, they can get you there really quick...another plus in my eyes is, he will do the biopsy on that trip instead of requiring a return trip like Cohen does. When we saw him last year, it was only 10 days from the time we had the money (we had to raise funds--did it in two weeks) until they could see us...

deb

[Guest guest]

I LIKE that fact about Shoffner -- that it is a one trip deal. The

problem that I have is that my doctors here in small town Nebraska

really need guidance and from what I understand Cohen will continue

to guide my doctors here as needed where as Shoffner diagnoses you

and then is done.......have I misunderstood this or am I correct?

Honestly that was the deciding factor for me

you are correct...Shoffner is pretty much a one time deal...HOWEVER, it depends on how good your docs are there...I have heard many talk about thier docs talking with him so I think he is willing to give guidance in the beginning and such and then lets the locals take it from there. If you want continuous follow up with anyone then you are likely going to have to make repeat trips. I didn't think I was going to want to see a Mitochondrialist but 's course has been so progressive and so involved that I ended up changing my mind a few months after we saw shoffner (andrew was normal fourteen months ago and now has almost every organ involved) and decided on Mark Korson in Boston...he will allow you to come just once a year if you want...which was my plan but once he saw he really thought we should come every six months but then he progressed so much, I took him back in 4.5 months...so all that to say, yes you are right but there are other mito docs you can go to after you get a dx. You can get a list from UMDF and then make a decision after you see shoffner. I have seen Cohen at the conference and he is good...he is also a bit more agressive with treatment from what I understand (than Shoffner) but I am assuming this is because his children have mito and so he is relating from a different viewpoint. On the other hand, I think even Cohen would agree that Shoffner is the best diagnostician around so you could go to S for your testing and then get your appt with Cohen for six months after and see them both!

deb

[Guest guest]

I LIKE that fact about Shoffner -- that it is a one trip deal. The

problem that I have is that my doctors here in small town Nebraska

really need guidance and from what I understand Cohen will continue

to guide my doctors here as needed where as Shoffner diagnoses you

and then is done.......have I misunderstood this or am I correct?

Honestly that was the deciding factor for me

you are correct...Shoffner is pretty much a one time deal...HOWEVER, it depends on how good your docs are there...I have heard many talk about thier docs talking with him so I think he is willing to give guidance in the beginning and such and then lets the locals take it from there. If you want continuous follow up with anyone then you are likely going to have to make repeat trips. I didn't think I was going to want to see a Mitochondrialist but 's course has been so progressive and so involved that I ended up changing my mind a few months after we saw shoffner (andrew was normal fourteen months ago and now has almost every organ involved) and decided on Mark Korson in Boston...he will allow you to come just once a year if you want...which was my plan but once he saw he really thought we should come every six months but then he progressed so much, I took him back in 4.5 months...so all that to say, yes you are right but there are other mito docs you can go to after you get a dx. You can get a list from UMDF and then make a decision after you see shoffner. I have seen Cohen at the conference and he is good...he is also a bit more agressive with treatment from what I understand (than Shoffner) but I am assuming this is because his children have mito and so he is relating from a different viewpoint. On the other hand, I think even Cohen would agree that Shoffner is the best diagnostician around so you could go to S for your testing and then get your appt with Cohen for six months after and see them both!

deb

[Guest guest]

Deb:

I LIKE that fact about Shoffner -- that it is a one trip deal. The

problem that I have is that my doctors here in small town Nebraska

really need guidance and from what I understand Cohen will continue

to guide my doctors here as needed where as Shoffner diagnoses you

and then is done.......have I misunderstood this or am I correct?

Honestly that was the deciding factor for me.

> ...

>

> I think with Shoffner once your insurance stuff is a go with

Shoffner, they

> can get you there really quick...another plus in my eyes is, he

will do the

> biopsy on that trip instead of requiring a return trip like Cohen

does. When

> we saw him last year, it was only 10 days from the time we had the

money (we

> had to raise funds--did it in two weeks) until they could see us...

>

> deb

[Guest guest]

Deb:

I LIKE that fact about Shoffner -- that it is a one trip deal. The

problem that I have is that my doctors here in small town Nebraska

really need guidance and from what I understand Cohen will continue

to guide my doctors here as needed where as Shoffner diagnoses you

and then is done.......have I misunderstood this or am I correct?

Honestly that was the deciding factor for me.

> ...

>

> I think with Shoffner once your insurance stuff is a go with

Shoffner, they

> can get you there really quick...another plus in my eyes is, he

will do the

> biopsy on that trip instead of requiring a return trip like Cohen

does. When

> we saw him last year, it was only 10 days from the time we had the

money (we

> had to raise funds--did it in two weeks) until they could see us...

>

> deb

[Guest guest]

Deb:

I LIKE that fact about Shoffner -- that it is a one trip deal. The

problem that I have is that my doctors here in small town Nebraska

really need guidance and from what I understand Cohen will continue

to guide my doctors here as needed where as Shoffner diagnoses you

and then is done.......have I misunderstood this or am I correct?

Honestly that was the deciding factor for me.

> ...

>

> I think with Shoffner once your insurance stuff is a go with

Shoffner, they

> can get you there really quick...another plus in my eyes is, he

will do the

> biopsy on that trip instead of requiring a return trip like Cohen

does. When

> we saw him last year, it was only 10 days from the time we had the

money (we

> had to raise funds--did it in two weeks) until they could see us...

>

> deb