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Ph questions?


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#1 beverly

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Posted 05 March 2008 - 04:26 PM

Ok those who have SPH, I was wondering when did you start noticing shortness of breath, if at all? How long did it take you to get a diagnosis from your doctor and what did you go through to get it? Were you excercising when you were diagnosed? How many of you have chest pains and are lightheaded? Is it from scleroderma or your PH?

Just a few questions :mellow:

Beverly

#2 Shelley Ensz

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Posted 05 March 2008 - 04:42 PM

Hi Beverly,

Why do you ask? Are you experiencing symptoms of pulmonary hypertension, or undergoing tests for it? Everybody is different and some people develop PH even without any symptoms. There's lots of info, including many personal stories, on our main site at:
http://www.sclero.or...ion/a-to-z.html
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 peanut

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Posted 05 March 2008 - 06:12 PM

Beverly,
These are good questions for your doctor & you to discuss.
I've been short of breath for several years now. At first they said it was asthma, then I was diagnosed with interstitial lung disease caused by sclero. Then my doctors said it was cause my lung disease after a year we looked into PH and after an inconclusive echo and a good right heart cath it was decided I have mild PH. No chest pains or lightheadedness. If you're experiencing this definitely talk to your doctor.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 beverly

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Posted 05 March 2008 - 08:14 PM

Thank you Shelley for the link.

I have experienced "symptoms" of ph for quite a few years it just seems though in the last 6 months my symptoms have increased quite a bit. Mostly chest pains, light headed and lots of fatigue. I am waiting on an echo, I had one 3 months ago, it said there was mild dilation in the vena cava and they couldn't find my pulmonary pressure so they have done a follow up this week.

I just haven't noticed shortness of breath or I wonder if I have just gotten use to breathing a certain way. I thought that was one of the symptoms needed to diagnose Ph.

Thank you

Beverly

#5 susie54

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Posted 06 March 2008 - 03:04 AM

Hi Beverly,

Since the beginning of my MCTD, I would have bouts of shortness of breath that were very hard to deal with. I have had an echo twice and it has shown borderline pulmonary hypertension and decreased DLCO on pulmonary function tests.But I am fine right now. When I had my last symptoms last November, I had dizziness, shortness of breath , chest pain and a feeling of no air at times. I hope it stays away for a long time. And I hope you don't have much trouble from symptoms either. Susie54