Re: adjusting to new neurologist who is adjusting to me and cf/ you forgot somet

[Guest guest]

Dear n,

You forgot your biggest coping skill, Your great sense of humor!!!!

Lots of love,

mom of a 9 wcf, Venanzio 6 wocf, Pepe 3 nocf

> 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

>

>

>