Re: [MSA]..Anyone with experience?

[Guest guest]

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

>

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