Re: [MSA]..Anyone with experience? -bill & sally

[Guest guest]

Hi Bill and Sally,

I am still learning the medical terms, still don't

know most of them. My neuro has told me about writing

symtoms and question together so he can document it

also plus answer important questions. The only thing

that he did say was he wanted my bp for each day -

standing and laying, not an average. But he is also

looking for some correspondence to the bp and some

symptoms, to see if he can refine meds more. This

will also help him to order my home oxygen. Anyway,

he was very pleased when i took it with me.

wanda

--- Werre b.werre@...> wrote:

> Sally,

>

> As you know (even with doctors) " the squeeking wheel

> gets the oil " . )

> However, with doctors, you must learn to squeek

> correctly. That is why we

> suggest a journal of daily symptoms, BP,

> temperature, medicine times,

> symptoms, relief, etc. I have found that if you

> keep a journal, then

> summarize the notes in a short note to the doctor at

> each appointment, you

> will get better care from your doctor.

>

> The doctor does NOT want the journal, they do want

> average temperature/BP

> (and highs and lows) along with new symptoms, any

> relief with meds, and any

> ideas you have on things that seem to help. They

> also want to know any side

> effects - but if the side effect is listed as " call

> doctor immediately (or

> ASAP) " don't wait. Always read the literature with

> any new medicine

> carefully and watch for side effects. A half a

> typewritten page is enough to

> summarize 4 months of care, almost always.

>

> My other suggestion is that you learn medical terms

> such as ataxia (movement

> disorder), dysphagia (swallowing/speech problem),

> dystonia (muscle in

> permanent spasm), etc. All insurance companies

> require forms now that have

> your symptoms listed. Ask the doctor or look up the

> meanings of those words,

> so you know what the doctor is talking about and

> don't miss something.

>

> Take care, Bill Werre

>

> ===================================

>

> Sally Lesline wrote:

>

> > Bill

> > I assumed that was probably the situation and yes

> I do agree it's time

> > for Speedy's doc to step in and lay the ground

> work. It's unfortunate

> > that it wasn't done before they had the

> appointment.

> >

> > I do think sometimes that doctors do forget they

> need to explain why

> > they are sending a patient on to see the

> specialist. Since we know

> > Marilyn isn't going to just take that response and

> let it drop (after

> > all she has all of us here to rely on) many

> patients would just walk off

> > and assume they didn't stand a chance of having

> the surgery.

> >

> > I knew someone would know what to tell Marilyn.

> > Thanks Bill

> > Sally

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

[Guest guest]

Wanda,

I used a sitting and reclining BP average for the time between appointments

(3-6 months) and also noted any highs and lows and dates. Then if the doctor

wanted more I had the data sheets.

Take care, Bill Werre

[Guest guest]

Bill,

Would you carry the data with you in case he wanted it

or take it later if he wanted it. Still trying to

figure out what is the best way to keep so many papers

together. Bought a notebook to start with

wanda

--- Werre b.werre@...> wrote:

> Wanda,

>

> I used a sitting and reclining BP average for the

> time between appointments

> (3-6 months) and also noted any highs and lows and

> dates. Then if the doctor

> wanted more I had the data sheets.

>

> Take care, Bill Werre

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Bill,

Would you carry the data with you in case he wanted it

or take it later if he wanted it. Still trying to

figure out what is the best way to keep so many papers

together. Bought a notebook to start with

wanda

--- Werre b.werre@...> wrote:

> Wanda,

>

> I used a sitting and reclining BP average for the

> time between appointments

> (3-6 months) and also noted any highs and lows and

> dates. Then if the doctor

> wanted more I had the data sheets.

>

> Take care, Bill Werre

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Bill,

Would you carry the data with you in case he wanted it

or take it later if he wanted it. Still trying to

figure out what is the best way to keep so many papers

together. Bought a notebook to start with

wanda

--- Werre b.werre@...> wrote:

> Wanda,

>

> I used a sitting and reclining BP average for the

> time between appointments

> (3-6 months) and also noted any highs and lows and

> dates. Then if the doctor

> wanted more I had the data sheets.

>

> Take care, Bill Werre

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>