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Re: re: porphyria

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,

This new doctor sounds like a definite " Keeper " !!! I'd hang on to him like

crazy glue if I were you! Even if he refers you up to Bawstun to the big

league, you'll probably still need a local specialist for emergencies and script

writing, and this doctor sounds like the man to have at your bedside and on

your team!

It's such a relief to find a doctor who really understands this disease, and one

who's honest enough to admit that there are aspects of the disease that are

beyond his training and knowledge. If I remember correctly, you're in Rhode

Island, right?

I wasn't impressed with the way your PCP spoke about Dr. Lehman, and

seemed to question his opinions and treatment, so I'm really glad that you've

found this new GI. It sounds as though he'll treat you right and send you to

someone with more specialized knowledge if he runs into anything he can't

handle. This is such great news!

Okay, I'll lay off my lecturing about diabetes, but I do urge you to ask your

new GI to keep an eye on your BG levels as a regular part of his treatment.

I'd just hate for anyone to have to go through the needless suffering and

trauma that I did before my DKA.

If the edema is still bothering you, try to avoid salty food, and keep your legs

elevated as much as possible. When I had it really bad, I slept with my legs

elevated on pillows. I wasn't able to take diurectics, because of my diabetes,

but that's something that your doctor might consider.

Do keep in touch as you can. I'm anxious to hear how the rest of your

treatment goes with this new GI. BTW, I think your PCP's analysis of

porphyria is bunk.....but that's only my opinion, you can take it or leave it.

It

sounds as though he's grasping at straws. The new GI should be able to get

you all straightened out.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

South Eastern Regional Rep., PAI

Note: All comments or advice are from personal experiences or opinion only,

and should not be a substitute for consultation with your medical professional.

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