RE: Digest Number 951/Dr. Jankovic

[Guest guest]

,

Welcome to the group, although I'm sorry you have to

be here.

My father has seen Dr. Jankovic in Houston two times.

He is treating his dystonia (one of his most troubling

MSA symptoms) with Botox injections. I took my father

down for the first visit. I was very impressed with

the clinic at Baylor. I know that Dr. J. is very

knowledgeable. We chose to see him for the Botox

treatment b/c he was a pioneer in that field. However,

I have to say that I didn't find him very

compassionate and his bedside manner leaves a lot to

be desired. At times, it even seemed that he was quite

annoyed by our questions. He was often very flippant

and aloof. This wouldn't bother some people, but it

bothered us a lot. We will continue to see him for the

injections, but he is not my father's regular

consulting Dr. I don't mean to sound critical and

negative, but wanted to be honest since you asked. :-)

in OK

--- Maciejewski

wrote:

> Hi, my name is , and my husband, Jeff has been

> recently diagnosed with

> MSA. We live in West Central Texas, and this is the

> first MSA patient that

> our neurologist has ever seen. She is thinking

> about referring him down to

> Baylor medical in Houston to confirm the diagnosis.

> The doctor's name

> starts with a " J " , but we were so floored by all of

> this, that I don't

> remember the name. Does anyone in Texas know of

> good doctors in the state

> who specialize in this disorder? Jeff is in the

> early stages, according to

> our doctor, but his symptoms have been present for

> about 2 years. They

> just couldn't figure out what was wrong. And our

> neurologist is not 100%

> sure on the diagnosis, as he has some of the

> " symptoms " , but not all of

> them. Any help/input would be appreciated. Thanks.

>

>

> Re: Mark is starting his journey home

>

> Hi Annette- I know that there are some great things

> for saliva- used by

> rheumatologists and oncologists. What is going on?

> I admire your fight- the good fight!!!!

>

> Best wishes,

> Waverley

>

>

> >>> Jwmop@... 09/05/01 05:55PM >>>

> Hi, Judy, This is Annette, We have talked about Mark

> and being

> much alike, I can't really identify with what you

> are facing right

> now but my prayers are with you.....I think I know

> what you mean

> about it being a little easier since his mind is

> going. I didn't

> expect that to happen. I hope to keep at home

> until the end too

> but I will scream for Iv antibiotics until they

> prove to me that they

> won't help. has surprised us before and I have

> no way of

> knowing how many times lie ahead of us. We just this

> hour got back

> from the doctor's office.....semi-annual visit now.

> The Doctor

> doesn't do anything but talk to me. I asked for

> something to help

> with his saliva as we hope to celebrate the marriage

> of our youngest

> son in a little over six weeks. It was this time

> last year that i

> thought he would not live move then a couple of

> weeks.....I made

> arrangements to donate his brain, bought funeral

> plots etc. but

> just three days of iv fluids and he perked up and we

> have had a very

> blessed year with our family. I hope when the time

> comes though that

> I will be brave enough to accept God's wisdom and

> soveranty. I pray

> for the peace of his presence to be with you . Love

> from a kindred

> caregiver.

> > Hi All,

> >

> > Mr. Mark has began the process of traveling home.

> His Doctor was

> back today

> > and read the lung report from last week and said

> Mark has a very

> drug

> > resistant bacteria growing and gave me two

> choices. One to bring

> him to the

> > hospital and treat him with IV drugs or begin the

> process of

> letting him go.

> > I chose letting him go and the Doctor said it's

> the best thing to

> do because

> > he couldn't even promise that the IV drugs would

> kick the bacteria

> and even

> > if they did, Mark will be right back to the same

> place within 30

> days.

> >

> > The poor soul is crazy out of his mind, pulled out

> his cath and

> inner cannula

> > to the trach list night, insists that little men

> came

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