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Biomarker for Diffuse Scleroderma skin has been discovered!


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Awful Gp Doc Appt


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#1 VEGAN

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Posted 11 October 2007 - 10:00 AM

I was diagnosed CREST 7/07, & due to insurance changes, etc., still needing a general practitioner. Waited 2 1/2 months for today's appt, so with that build up I had high hopes. I went in with my records, and my list of questions, etc.

This sounds hard to believe, but she ended up denying that I had systemic scleroderma (despite 2 rheumatologist diagnosis's in the records), saying that anyone can have a false positive. She said that if she had an ANA screening today, she would probably test positive. When I asked her where she thought my pain was coming from, she turned her chair to look me squarely in the eye and said, "depression".

I gathered my papers, said she should not charge me for this visit, to which she replied, "I've spent 25 minutes with you." I went to file a complaint with the hospital. They arranged for me to be seen by a different doctor, who handled my case very professionally, with prescriptions, blood tests, Immunology referral, and GI follow up for an abnormal finding on my endoscopy, and 2 week follow up appt with him.

Makes you wonder, how many sick people are out there deteriorating while on anti-depressants?

#2 jefa

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Posted 11 October 2007 - 11:01 AM

At least you had a reasonable outcome from the disaster. I am glad the hospital came through for you. I have had to write over the heads of medical people to get what I needed more than once. We have to speak up for ourselves, unfortunately. That said, in spite of this situation (and partly because of it) depression can be a real issue in these cases. There can be a place for antidepressants in an well-thought out treatment plan.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#3 janey

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Posted 11 October 2007 - 11:26 AM

WOW - What a stressful visit! Good for you for keeping it together enough to get out of there and work with the hospital on a resolution. Which sounds like was a great resolution! I hope this new doctor works out. It sounds like he's already off to a great start!

Big Hugs,
Janey Willis
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#4 Shelley Ensz

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Posted 11 October 2007 - 12:46 PM

That is an excellent example of how to handle a bad situation. It is more than enough to have scleroderma, without dealing with stuff like this on top of it.

My bet is that your hands don't look like the classic textbook case of scleroderma. Some doctors have a knee-jerk reaction that if your hands are not frozen into stone, you can't possibly have scleroderma. Whereas, nothing could be further from the truth.

Kudos for you, for overcoming it -- and congrats on your wonderful new doctor, too!
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#5 Margaret

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Posted 11 October 2007 - 02:13 PM

<<Makes you wonder, how many sick people are out there deteriorating while on anti-depressants?>>

Hi VEGAN ,

I am so sorry to hear you went through that. That is so scary to think there are such incompetent doctors out there. Because of our move, Gareth saw a new primary care physician today, too, and our experience was the opposite. I had all his papers and info (been gathering them all since last year) and he copied many of them. He wrote a script for the blood work he felt needed updated (from Aug 07) and was very interested in Gareth. He said if Gareth got sick and needed to come in that I was to tell the appt ladies he was to be seen that day.....no putting off appt for another day. He is also ordering a 24 hr urine test.....anyone been through that? Gareth is positive for the AntiRNA Polymerase 1/111 and he wants to be sure to keep that 'in control.'

Do take care, Everyone.
Margaret

#6 Maddy07

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Posted 11 October 2007 - 04:04 PM

I'm so sorry you had to deal with that. I'm glad you handled it so well though and that you had a good outcome.

My rheumatologist (only seen her once) is not on the same page as me and after being diagnosed as CREST for 10+ years now, she suddenly spouted off that she thinks I might have Sjogren's Syndrome and not CREST. I have zero, ZERO symptoms of it....she asked about dryness in mouth, eyes, etc... and I have none of that. I have the anti-centromere pattern come up every time they test my ANA, I have Raynaud's, some thickening of my right hand, skin that just feels "different" or "a little tough" (as described by another doctor, or people who do blood draws on me), and I have Telangiastia (sp?). And yet she pulls Sjogren's Syndrome out of her back pocket. It is very frustsrating!

Anyway, sorry to write all that. Just saying I can sort of relate. I see my rheumatologist again next Wednesday and if we are both not on the same page (want her to explain her reasoning and treatment plan), then I'm seeking a second opinion.

I'm glad you were able to see a doctor that same day and have your issues addressed. It stinks to walk away from an appointment and have to wait to see someone else and feel like nothing got done. Way to advocate for yourself!!
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#7 eah

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Posted 11 October 2007 - 04:58 PM

Maddy,

It is my understanding that a lot of people with Scleroderma develop secondary sjogrens. You might have both. But if you don't have any symptoms of sjogrens, I am not sure why the doctor would suggest that. I have both. Although, I opted to not have biopsy of lip to prove it or even the blood work. Ironically, I don't have skin involvement with my scleroderma. So I always get questioned by other doctors, but not my rheumatologist.

eh
ANN

#8 WestCoast1

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Posted 11 October 2007 - 06:25 PM

Vegan,
Its awful to hear stories where a patients needs are not being met...on the other hand I am glad to hear that you found a doctor that really listens to you.

Maddy,
My doctor is looking into the same issue. Please let us know what you find out. Have you been tested for the antibody indicating Sjogren's Syndrome?
*WestCoast*

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