Re: adjusting to new neurologist who is adjusting to me and cf

[Guest guest]

Persistance pays off. I am so glad you found the doctor that you

needed. It is amazing that you can handle everything so well.

Feel free to vent anytime!

Sara

> Some months ago my favorite neurologist in all the world, whom I

had

> seen for nearly 20 years, went to a conference in Ireland, and

moved to

> Upstate, New York. I had had a strong intuition about this, and

had writ

> ten her a letter wishing her the best personally and

professionally in her

> new location. Her office called me back and informed me that she

had

> not " announced " this yet, and how had I known. I said, quite

truthfully,

> that

> I had " just known, " or I would not have written the letter. They

expressed

> the neurologist's appreciation of my letter, and said that she had

been very

> moved by it. You bet-- " moved " clear to New York State!!

>

> I was familiar with a number of neurologists in the East Bay where

I live and

> frankly detested them all. So, a-hunting I went. I landed one

who promptly

> as

> sured me that although he understood about my temporal lobe

epilepsy, he

> had doubts about my having multiple sclerosis. So I suggested an

MRI of the

> brain, brainstem, neck and back. He went for it, condfident that

he was

> right.

> The radiologist came out after the MRI had been raid (about an

hour) and as

> ked me how long I had had MS, and I told him, and he said that

considering

> the number of plaques, I was fortunate indeed. I cheerily agreed,

and went

> on

> my way. The next week I saw the neurologist. He is a small chap,

and perse

> verant, but admires that quality in his patients as well. He

said, a big

> grimly,

> " Well there is no denying what these images tell me and the

conclusion of the

> radiologist. " I sat there quietly (yes, I can do that!) and

waited. Then he

> said,

> " As a matter of fact I feel that the situation is rather more

serious than I

> had at

> first assumed. " (he IS honest!). So that is when he put me on

Copaxone by

> subdural injection daily. Works fine! He tidily prescribed it

and the

> medica

> tion for my temporal lobe epilepsy, and said, grudgingly, " Well,

if you are

> will

> ing to put up with a neurologist who knows nothing about your

other medical

> problems, then are we on? " I said that we were. He said, " And I

am often

> not

> in the office. " I said that I would have little occasion to call,

and the

> pharmacy

> could fax for refills, and that I appreciated what he was doing

for me. The

> poor guy; he was really having trouble being consistently GRUFF

and truly

> GRUMPY. I put out my hand to shake his and he nearly fainted, but

shook it.

> I was on my way happily out the door when he said. " so long as you

don't mind

> that I am seldom here. " I assured him that I held him in the

highest esteem

> and was indeed honored and relieved to have found so good a

neurologist.

> He looked, briefly, as if he might vomit or faint, and finly

(briefly)

> grinned.

>

> Now from my point of view, he is a wonder; the last one I

interviewed wanted

> me to have 56 blood tests--all for things that had previously been

ruled out

> by

> other physicians--and she had written them on a prescription pad--

no less.

> This guy is a gem. I do not have to be a guinea pig test pilot

and he does

> not

> have to experiment on me endlessly. He sent me a copy of his own

notes on

> me, commenting that, he had confirmed all of my diagnoses--with my

special

> ists, my internists, and the radiologist, and could not imagine

how someone

> could be so calm while coping with all this.

>

> As a cystic fibrosis patient, I can tell you why: I am calm about

all this

> beca

> use I have great specialists, a great internist, a marvelously

funny pharma

> cist who will work with my doctors to get me what I need--and they

are all

> with

> in eight miles of where I live. I do not have to be a guinea pig

while being

> a

> test pilot any more! Every med or supplement that I take works.

Besides I

> have a good life, good friends and family--and a great view of the

ocean

> and of the Golden Gate Bridge--let that out with the neurologist!

>

> Thank you for allowing me to vent quite a lot,

> Love to all at all the lists which receive this,

> n Rojas, wcf, CFRD and a few other annoyances

>

>

>

[Guest guest]

Judy; I remember you; I was working in Oregon at the time (recupera

ting from death of hubby due to cancer), and that was where I met Dr.

Hardy, who still does sputum cultures randomly for me. I remem

ber you! All too many are gone, I know, and this is sad. I am sure that

my mother never did (she died at 101) grasp the fact that I had actually

grown up! Dr. Hardy and I have enjoyed one another perhaps, not only

because we each laughed at one another's jokes at that Bradley

Foundation meeting, but because she just IS a great cf doctor and you

were wise to have invited her. I returned to California shortly after that

to

my neurologist of many more years, to Dr. Hardy (thank you!), and the other

specialists whom I had had here. All is well. But I am sorry to hear that

you had to move back east, where my parents dragged me from. It is so

sweet of you to write. Thank you so very much! Mi " Kids " are 41, 39, and

37! (wcf)

Love to you and to yours,

n J. Rojas, founder of the Salty Old Fools Club; I am now 65 and NO

ONE believes it!

[Guest guest]

Dear n,

I would so love to see the Golden Gate Bridge again as we have moved from Sac.

to Delaware and miss the bay area very much. Especially sour dough bread. So

have some for us easteners and enjoy your new Dr.

I use to be the President of Bradley E in Sacramento and you spoke at one

of our conferences. I do miss getting together with all you CA people.

Thank you always for your great stories.

judy Skeffington

mom to 19 with CF

adjusting to new neurologist who is adjusting to me and

cf

Some months ago my favorite neurologist in all the world, whom I had

seen for nearly 20 years, went to a conference in Ireland, and moved to

Upstate, New York. I had had a strong intuition about this, and had writ

ten her a letter wishing her the best personally and professionally in her

new location. Her office called me back and informed me that she had

not " announced " this yet, and how had I known. I said, quite truthfully,

that

I had " just known, " or I would not have written the letter. They expressed

the neurologist's appreciation of my letter, and said that she had been very

moved by it. You bet-- " moved " clear to New York State!!

I was familiar with a number of neurologists in the East Bay where I live and

frankly detested them all. So, a-hunting I went. I landed one who promptly

as

sured me that although he understood about my temporal lobe epilepsy, he

had doubts about my having multiple sclerosis. So I suggested an MRI of the

brain, brainstem, neck and back. He went for it, condfident that he was

right.

The radiologist came out after the MRI had been raid (about an hour) and as

ked me how long I had had MS, and I told him, and he said that considering

the number of plaques, I was fortunate indeed. I cheerily agreed, and went

on

my way. The next week I saw the neurologist. He is a small chap, and perse

verant, but admires that quality in his patients as well. He said, a big

grimly,

" Well there is no denying what these images tell me and the conclusion of the

radiologist. " I sat there quietly (yes, I can do that!) and waited. Then he

said,

" As a matter of fact I feel that the situation is rather more serious than I

had at

first assumed. " (he IS honest!). So that is when he put me on Copaxone by

subdural injection daily. Works fine! He tidily prescribed it and the

medica

tion for my temporal lobe epilepsy, and said, grudgingly, " Well, if you are

will

ing to put up with a neurologist who knows nothing about your other medical

problems, then are we on? " I said that we were. He said, " And I am often

not

in the office. " I said that I would have little occasion to call, and the

pharmacy

could fax for refills, and that I appreciated what he was doing for me. The

poor guy; he was really having trouble being consistently GRUFF and truly

GRUMPY. I put out my hand to shake his and he nearly fainted, but shook it.

I was on my way happily out the door when he said. " so long as you don't mind

that I am seldom here. " I assured him that I held him in the highest esteem

and was indeed honored and relieved to have found so good a neurologist.

He looked, briefly, as if he might vomit or faint, and finly (briefly)

grinned.

Now from my point of view, he is a wonder; the last one I interviewed wanted

me to have 56 blood tests--all for things that had previously been ruled out

by

other physicians--and she had written them on a prescription pad--no less.

This guy is a gem. I do not have to be a guinea pig test pilot and he does

not

have to experiment on me endlessly. He sent me a copy of his own notes on

me, commenting that, he had confirmed all of my diagnoses--with my special

ists, my internists, and the radiologist, and could not imagine how someone

could be so calm while coping with all this.

As a cystic fibrosis patient, I can tell you why: I am calm about all this

beca

use I have great specialists, a great internist, a marvelously funny pharma

cist who will work with my doctors to get me what I need--and they are all

with

in eight miles of where I live. I do not have to be a guinea pig while being

a

test pilot any more! Every med or supplement that I take works. Besides I

have a good life, good friends and family--and a great view of the ocean

and of the Golden Gate Bridge--let that out with the neurologist!

Thank you for allowing me to vent quite a lot,

Love to all at all the lists which receive this,

n Rojas, wcf, CFRD and a few other annoyances

[Guest guest]

n,

It must be extremely frustrating to deal with a new doctor. I am

glad that you found one that sounds like he will work with you.

Take care and Happy Mother's Day (a little early),

Gale