Re: Re: Dad's history (long)

[Guest guest]

In a message dated 8/13/1999 10:55:00 PM Pacific Daylight Time,

mjlinde@... writes:

<< " If the ears are not involved, it is not RP " >>

s ears have been fine for years. She is having just a little touch of

hearing problems now.

You are exactly right about that Eileen.

Thank you for sending in your dads history. I will keep your offer of

additional info in mind in case we are looking for anything in particular.

Roy

[Guest guest]

Eileen

What a story. You dad had his fair share and them some. I just buggs the crap

out of me that doctors ,just because they are in the dark about certain

diseases do nothing for it. or not enough for it. Your dad is a prime

example. I think at some point your dads records may come in handy. Keep then

handy

Angie

[Guest guest]

Oh Eileen,

I have read your post 3 times and still I don't know what to say. I'm

completely and totally numb. God what you and your sister have gone through

watching this. At the moment, I can't think of a single thing to ask, but I

know there's plenty I will want to. 2 short years and he was gone because of

misdiagnoses and doctors who couldn't or wouldn't admit they didn't know

what to do.

Thank you so much Eileen for telling us this. I'm sure it was painful to

think about again and I really do appreciate it. I'm going to close for now,

but please know my thoughts and prayers are with you and once again " Thank

You " !

>>>>>>>>>>>>>>>>>>>>>>>>>>>

I will try to give you the short version first - Dad's medical records are

about 3 inches

thick, and that's only three years! Dad was vigorously healthy - put a new

roof on my garage

when he was 75, and almost killed my couch potato husband who was helping

him. It all

started when he got stung by a yellowjacket in August of 1995. He developed

terrible

flulike symptoms and finally had to be hospitalized because he couldn't stop

vomiting and

couldn't stand up. He recovered, and was was sent home with a clean bill of

health.

That fall, the muscle pain started. He was being treated by a GP with large

doses of

Prednisone. Then he was diagnosed with (excuse my spelling - this is from

memory)

polymylagia rheumatica (PMR). Then he developed a cough that would not go

away

[Guest guest]

In a message dated 8/14/99 11:30:02 AM Central Daylight Time, Rlr1999@...

writes:

<< " If the ears are not involved, it is not RP " >>

Eileen,

Thanks for sharing the story of your Dad.

My rheumy still insists that the ears have to be involved. I'm thinking she

doesn't know entirely what she's talking about. Also, I went in for my two

month check....had the butterfly rash and she insists THAT isn't the R.P.,

it's the Prednisone!!!!!!!!! When I tell her about how much I'm hurting

(ribs, back, knee, elbow, nose), she says THAT'S the arthritis.....not r.p.

I REALLY wish i could find another dr. Guess I'll just have to keep looking.

Love,

T.

[Guest guest]

In a message dated 8/19/99 10:48:51 PM Central Daylight Time, WCTET42@...

writes:

<< Get to looking and get

changed.

Eunice >>

Eunice,

Excellent advice, I know. But the 4 hour round trip drive doesn't sound very

appealing, especially when I'm having a flare.

Love,

T.

[Guest guest]

In a message dated 8/20/99 2:21:26 AM Central Daylight Time,

Okiebabes@... writes:

<< Eunice,

Excellent advice, I know. But the 4 hour round trip drive doesn't sound

very

appealing, especially when I'm having a flare.

Love,

T. >>

Hi ,

Is it 4 hours to the nearest doc?

Lu

[Guest guest]

<<My rheumy still insists that the ears have to be involved. I'm

thinking she

doesn't know entirely what she's talking about. >>

T., I wanted to let you know that I've been diagnosed with RP and

have no ear involvement whatsoever. My doctors fought the diagnosis for a

while, but everything else fits and they finally conceded. When I moved

to Austin, I explained all of this to all of my doctors, and they have

all confirmed the diagnosis. Just wanted you to know. Shanin

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[Guest guest]

In a message dated 08/20/1999 3:21:00 AM Eastern Daylight Time,

Okiebabes@... writes:

<< Excellent advice, I know. But the 4 hour round trip drive doesn't sound

very

appealing, especially when I'm having a flare.

Love,

T. >>

t

it may not sound appealing but if the quality of care is better it is worth

it in the long run

Angie