Re: Question about Dr. Lindor

[Guest guest]

I must have just caught him on a bad day. My experience was very

different but I'm glad to read that it's not representative.

Ruth

>

> I would like to " ditto " what Tarheel Tim " has to say about Dr. Lindor.

> We love the guy.

[Guest guest]

Ruth -

If I remember correctly (and tell me if I'm wrong), your Mayo doctor talked with Dr Lindor while you were there and then facilitated you being able to meet with him that very afternoon (maybe even without an actual appointment?). From my perspective as a Nurse Practitioner, for a physician, especially a busy, well-respected specialist, to take time to meet with someone is amazing. Yet, this can be good and bad - great that the doctor takes time to see you, even "briefly", but bad if you or the doctor feels rushed.

I'm sorry your experience wasn't great, as everyone speaks so highly of him. Yet, from my perspective, his willingness even to shake your hand and say "Hi" before you had to wait for an appointment with him was astounding!

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06; JRA 1998)

I must have just caught him on a bad day. My experience was very different but I'm glad to read that it's not representative.Ruth

..

[Guest guest]

Joanne,

I agree that it was amazing that it happened that way, I'm so in awe

of that place. I wish that day had turned out differently in more

ways than one But I do feel very lucky to be his patient and I'm

very much encouraged by what I've heard of other people's experience

with him. After all, it's such an important relationship!

Ruth

>

> Ruth -

>

> If I remember correctly (and tell me if I'm wrong), your Mayo

doctor talked

> with Dr Lindor while you were there and then facilitated you being

able to

> meet with him that very afternoon (maybe even without an actual

> appointment?). From my perspective as a Nurse Practitioner, for a

> physician, especially a busy, well-respected specialist, to take

time to

> meet with someone is amazing. Yet, this can be good and bad -

great that

> the doctor takes time to see you, even " briefly " , but bad if you or

the

> doctor feels rushed.

>

> I'm sorry your experience wasn't great, as everyone speaks so

highly of him.

> Yet, from my perspective, his willingness even to shake your hand

and say

> " Hi " before you had to wait for an appointment with him was

astounding!

>

> Joanne H

> (, Ca., mom of , 18, UC/PSC 2-06; JRA 1998)

>

>

> I must have just caught him on a bad day. My experience was very

> different but I'm glad to read that it's not representative.

>

> Ruth

>

>

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[Guest guest]

Ruth -

As the mom, I can only imagine how you would wish that day was different. Possibly to wish Dr. Lindor had disagreed with the diagnosis or at least come up with something fixable!

This is an unrelated thought (or tangential), but I have thought it so many times... my son has a friend who I swear has some type of autoimmune disorder, but so far (after 4 years) still has no diagnosis (despite evaluation by 3 different physician medical groups - each with multiple specialist appointments). From a rheumatologist he carries a chronic fatigue diagnosis. Yet this teenage has been sick as stink. When I look at him or talk with his mom - I wonder - is it better to have a diagnosis? Or is it harder to be ill, yet not have anyone able to confirm what the cause is? Probably an unanswerable question.

Take care.

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06; JRA 1998)

Joanne, I agree that it was amazing that it happened that way, I'm so in awe of that place. I wish that day had turned out differently in more ways than one Ruth

..

[Guest guest]

I think that having symptoms without having a diagnosis is the worst.

The uncertainty is terrible - you don't know what you're dealing

with, what the future holds. It's like having PSC but worse. I'm a

firm believer that knowledge is power. It took months to diagnose me

when I first got Ulcerative Colitis, and that period before diagnosis

was terrible. I feel for your son's friend. I hope they are being

proactive in their search for a diagnosis. Based on my experience, it

really benefits to see doctors who have seen many patients with rare

diseases, like at Mayo Clinic or other big centers like that.

Diagnosis is really an art, and nothing beats experience.

Ruth

>

> Ruth -

> As the mom, I can only imagine how you would wish that day was

different.

> Possibly to wish Dr. Lindor had disagreed with the diagnosis or at

least

> come up with something fixable!

>

> This is an unrelated thought (or tangential), but I have thought it

so many

> times... my son has a friend who I swear has some type of

autoimmune

> disorder, but so far (after 4 years) still has no diagnosis (despite

> evaluation by 3 different physician medical groups - each with

multiple

> specialist appointments). From a rheumatologist he carries a

chronic

> fatigue diagnosis. Yet this teenage has been sick as stink. When

I look at

> him or talk with his mom - I wonder - is it better to have a

diagnosis? Or

> is it harder to be ill, yet not have anyone able to confirm what

the cause

> is? Probably an unanswerable question.

>

> Take care.

> Joanne H

> (, Ca., mom of , 18, UC/PSC 2-06; JRA 1998)

>

>

> Joanne,

>

> I agree that it was amazing that it happened that way, I'm so in

awe

> of that place. I wish that day had turned out differently in more

> ways than one

> Ruth

>

>

>

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