Re: Re: Marsha did you make it back from Shands?

May 26, 2006

sure you like getting together. let me know when, where etc...

For now I'm not concerned about going to Shands, rescheduling etc.... I

want to give things a chance with neuro in St Pete. If he continues as he

was in first initial appt then if he can't figure things out, maybe no one

can at this point. Time will tell.

Have to admit I feel more confident in neuro's and closer to answers with St

Pete neuro and local neuro than I have ever felt. In 2004 i saw several

neuro's and just got so discouraged each appt. When i started seeing local

neuro in Dec, I haven't felt like I did in 2004. I felt validated, listened

to etc... He may not have reached the " right " dx or answer but he treated

symptoms, and looked beyond MS (which no other neuro has ever done). And

then add St Pete neuro now to the picture, maybe my chances are higher in

getting answers. But maybe there aren't any answers to get just yet, but if

either or both willing to continue treating symptoms, I may have to accept

that for now.

I am not surprised Shands Dr hasn't communicated with Mayo. There seems to

be like a rival between the two places. Not sure why, you would think

doesn't matter who or where ppl go for help, would think all would want a

team effort and best for the patient.

" reschedule they make life difficult to get back on the schedule "

Interesting. Not sure how it is with others, but for me, I had no choice.

They just called, left a message my appt was this day and this time. So do

they not think ppl have lives outside of going to Shands? ummm. the day

they scheduled for me I couldn't go even if wanted to. As it is on a day

that I will be attending a conference in ville Beach (for work).

This is an internal " retreat " for ALL our programs in Florida, is mandatory

etc... I'm sure if I really needed that day for doc's appt, I could work it

out. But how can Shands not expect ppl to need reschedule when they give an

appt without talking to patient?

Anyway best to you. Hope you have a restful and nice weekend.

marfla

Be Blessed

Re: Marsha did you make it back from Shands?

Marsha

WOW everything from this new neuro sound progressively positive.

As far as Valenstein at Shands, I was told that if you cancel or even

reschedule they make life difficult to get back on the schedule. Also

you need to know I ended up writing Valenstein a scalding letter about

his biggest concern being condescending to a former fellow than

addressing my life-threatening medical crisis. Sure he confirmed PLS

while I was dying of adrenal crisis and cerebellitis.

He has chosen NOT to communicate in a team effort with Boylan at Mayo

and Pioro at Cleveland Clinic concerning the new Epstein barr in

neurology data. His stand is still 'we don't treat EBV because it is

not important'. Not a real progressive stance to take right now.

I am improving continuously and hope to be able to meet some Florida

Friends real soon. Are you game for that?

Hugs

Eva

May 27, 2006

Hey Eva and all,

I am up for meeting as well.....definitely feeling not being in a pool for this

the 2nd weekend, but my brother comes back soon and the Y application should be

processed around that time too, so then i will have options cause my brother

goes out of town a lot in the summer.

wanted to share with ya'll that i did finally meet flora and doug and what a fun

time we had....very comfortable and lots of laughter! the most interesting part

was there was only intermittant illness talk and mostly just laughter over other

things....our waiter being one of them!! I hope so many of you come to the

retreat in october so that i can meet ya'll there and i know as the surveys keep

coming in, that so many i will get to meet!!

it is nice to be not so symptom focused right now and i am trying to enjoy every

second of it....just keep over doing it and then paying for it.....can't do as

much as i could last summer when i had my 6 months without progression. this

last wave of progression apparently has taken a bit more from me....in spite of

some of the progress i make being in the pool. i have the cutest little garden

and am awating my seedlings to come up! the boys and i are going for walkies

and getting them out of this small space more often now also, so for that i am

happy the most!

sorry that those docs won't look into the ebv stuff, especially when what is new

out there in research is well done scientific studies that truly should appeal

to them! keep taking care of yourself and enjoying your lovely space you have

over there on that other coast!!

hugs

tawny

email from

Tawny H. Swain Castle, MA