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Biomarker for Diffuse Scleroderma skin has been discovered!


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Who is right and who is wrong?


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#1 summer

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Posted 30 March 2008 - 05:57 PM

A quick update with my new Rheumatologist last week. Some of you may remember that I have Limited/Crest Scleroderma with some internal involvement at this stage, but no skin hardening.

My PFT DLCO has steadily been declining now for 12 months, so I have been told by my rheumatologist I either have ILD or PH. My rheumatologist doesn't think I have ILD due to the recent CT scan which was clear.

My Cardiologist doesn't think I have PH as I do not have SOB constantly only intermittently.

So, who Is right and who Is wrong?, my rheumatologist said that she can only mention to my Cardiologist that he should do this or that, but in the end it is his call.

Trying to get my Cardiologist to do a Right Heart Catheter is like getting blood from a stone. I was referred to him as he is the best in his field diagnosing PH.

Thanks for listening
Celia

#2 Buttons

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Posted 30 March 2008 - 11:18 PM

Hi Celia

Like you I was diagnosed with Limited SSc last July & also with Fybromyalgia and have been having trouble with shortness of breath, I have some skin tightening & problems with reflux & acid. My Rheumatologist referred me to a cardiologist who after tests says I have some fibrosis & some mitral valve regurgitation but he thinks it's probably my lungs so has referred me back to the Rheumatologist. I feel a bit like a ping pong ball being passed backward & forwards from one to another. My rheumatologist hasn't really done much to help me & so I have to put up with fatigue and aches & pains in my hands, knees, hips & ankles.

I have no answers for you except that you will have to keep asking your doctors for answers. But I am willing to listen because I know I find that helpful with this very peculiar disease.

Thinking of you

Jensue

#3 janey

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Posted 31 March 2008 - 04:35 AM

Celia,
Can you get one of your doctors to make a referral to a pulmonologist? That's the doctor that normally test for and does a diagnosis of PH and ILD. The RHT is the only way to truly diagnosis PH and a pulmonologist can order it. They are also the better doctor at reading HRCT's. Because of your SOB I would think is would be easy to get a referral to a pulmonologist.

You might check your insurance and see if referrals are even needed anymore. My insurance company dropped the referral process a couple of years back so now I can go to any doctor I want without a referral.

Big Hugs,
Janey Willis
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#4 debonair susie

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Posted 31 March 2008 - 10:02 AM

Oh Celia, Janey knows about these things. A pulmo is the dr who can clear this up once and for all... To know whether or not you have ILD or PH, should be more absolute than the runaround you're getting.
I sure do empathize with you and the situation as it now is.

Keep us posted...
Hugs, Susie
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#5 summer

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Posted 31 March 2008 - 01:11 PM

Thank you all for your replies, it is comforting to know that I am not alone in this.

Janey, I finally saw a Respiratory doctor a few weeks ago after a 6 month wait to see him. I was in and out of his office in 5 minutes, he had a quick look at my PFT results and was basically told that it was up to my rheumatologist to order tests for me. He did check my lungs and said all was normal. I was told that even if I had ILD he would not treat me, it was up to my rheumatologist.

There was a third year medical student with him at the time and he was more interested in informing him about Scleroderma. After much insistence on my part he did order me to have a CT chest, which was normal. I am also going to have a Gastroscopy as well as more tests for slow motility.

When I told my rheumatologist about the consultation with the Resp Physician she seemed to think I was rushed out of his office because he didn't think I had ILD.
She seems to think that all is pointing to PH. It is frustrating being bounced from one doctor to another with still no answers, this has been going on now for at least 9 months.

Thank you all for listening
Celia