Re: , Neurologists

May 23, 2002

My husband went through the evaluation at Vanderbilt in 1998, We found them

kind, caring and supportive.

I regret that some may patients have gotten lost in their process. I would

encourage you to contact Vanderbilt again. Let them know that you have

concerns.

Velma.Watkins@...>

Marilyn in TN

>

> Reply-To: shydrager

> Date: Thu, 23 May 02 21:06:59 -0600

> To: " shydrager post " shydrager >

> Subject: , Neurologists

>

> ,

> Dr. R.S. Burns, formerly of Cleveland, is supposed to be at SIU in

> Carbondale as head of the PD department, with experience with SDS. This

> is from a post about a year ago so I don't know if in fact he is there

> now, or if, perhaps, you have already seen him.

>

> Unfortunately, I CAN believe the Dr. who told you to let him do a brain

> autopsy! I never met a neurologist I liked, and I've had experience since

> I was 7 yrs. old, for my epileptic sister and continuing on into the

> mist. If on sees your husband that is the best. on's nurse

> said the same thing to us (send papers and we'll decide if in or out

> patient etc.) but we never heard back, and in the meantime my husband

> went to Fealey at Mayo-Rochester (a neurologist that I MAYBE MIGHT

> like) and had very good care. So we're forgetting on for now.

>

> OK, back to work.

>

> Barbara

>

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>

May 23, 2002

Barbara,

I tried to find the message you were replying to in the message below, to get

some idea of the point you were making. The only thing I could find was a

message from Diane Yates which mentioned nothing about some of the things you

mention. I know I have been out of town and may have missed some earlier

message, but I am interested in these comments, could you elaborate on or off

list as the message seems very cryptic to me.

Actually, there is no accurate or even universally accepted test for MSA

other than autopsy at this time so you MUST wait for more symptoms to appear

before you can diagnose it with confidence. The first doctor mentioned that

from what I read and 's big mistake may have been who she selected as a

second opinion as several people on the list had no BP problems until later

in the disorder. My wife had no real BP problems for the first 4 years, but

they said they only suspected OPCA at that time (1993-1994), and scheduled

MRI's a year or more apart, but warned us they could be inconclusive.

In the meantime we had a neurologist who diagnosed Charlotte as PD in 1990

and gave her PD meds which helped her with movement for several years. When

the Sinement started wearing off very early we went to another neurologist

who adjusted Charlotte's meds and added/removed some which helped somewhat

for another year. Knowing as much as I know now about the disorder, I feel

they both did the best they could with a terrible disorder. We went to a

third neurologist in 1996 as the one we had been going to moved to another

state to be closer to home. This neurologist also worked with us in trying

every medicine we could find unless she felt it would possibly have an

adverse affect. So in my experience, we have been three for three in good

experiences with neurologists.

Charlotte lived with MSA for at least 12 years after the initial diagnoses of

MSA, which is more than average at best. In 1996 we decided to stop looking

for a cure and concentrate on finding relief from symptoms as much as

possible. By then Charlotte had accepted a wheelchair and the need to do

exercises every day. Later in 1998 we accepted the need for a PEG and the

knowledge that we would also have to watch for infection the rest of her life

- yes all the hard way through experience.

I am sorry if you have had bad experiences with s few neurologists, but there

are good caring neurologists ou there. However, even country doctors with no

neurological experience have helped people here on the list with symptom

management by working with the patient/caregiver agressively. When you hear

of someone getting relief from a similar complaint, ask your doctor if it

might help your patient. Our doctors have all worked with us when we do this

type of footwork for them, they do have many patients to try to help. I have

always been involved in multi-disapline research and know the need to use

multiple ideas to solve tough problems. Two heads ARE better than one and

four heads ARE better than two if they are ALL willing to listen and be open

to other ideas.

Take care, Bill Werre

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