Hi There. I have secondary PH and MCTD. My PH has not been much of a problem for me. I have dermatomyositis, CREST scleroderma, and RTL epilepsy. I usually have problems with my DM flares.

I take my meds. I am on the prayer list at my church which has been the reason for my stable health. I think a strong relationship with The Lord has helped me cope with my diseases.

Good luck with your PH testing. I hope your disease will be mild like mine. Keep us posted.

Hi still, I have sjogrens , ana negative lupus with / positive high ssb/la s , I have 3 of the 4 major clinical signs if scleroderma but have only known about the esophageal dismotility since August and because of some things in my life have not been tested. My Ph is secondary to end stage IPF. My last number was 57 when I was cathed for a aren't a year ago while trying to get a Transplant which I was turned down for due to Co morbidities so I am at a new place now but on hold while we try to solve some issues. I have diabetes , heart problems some spine issues severe DDd which left me with nerve damage of varying amounts in my limbs worst in one leg. The arms are just loss of one sensation and some weakness which causes clumsiness. A bunch of odds and ends and that is more info than you ever wanted. I don't know that Ph causes so much of a problem for me because of the problems I have from IPF. I never know what causes what on this bad body but I try to do dishes and fold one load of laundry if it is brought to me everyday. My kid lives at home and attends local college. Good to meet you like your name it is appropriate. I have seen you on mctd Iam probably too blunt and try not to offend so I am working on it. Hope totally more with you. Tj

Oh I have terrible auto correct and typing issues on my phone my which my son used to promise to fix now he just laughs. I do to sometimes. As you can see from my other post. I forgot to mention I have been on oxygen 24/7 for almost 2 years I went to 5 liter from 4 last year. I was dxd in April 2010 with IPF my Ph showed on echos and caths for many Years before but when I asked my cardiologist about it I was told not to worry about it because it was just want they were doing at the time and it didn't matter. He also told me my 3 mildly leaky heart valves didn't require anything and would not cause a problem for 20 years and he never told me the measurement for my aortic root constitutes an aneurysm I have had what is called an AAA for several years and didn't know it. I am not happy with this man who moved right before I found this out at the Transplant center right before I was turned down. Thanks aren't you sorry you asked? Tj

Thanks TJ and trpt1 for your replies and your responses. I had the same response from my previous pulmonologist. She said the elevated diastoli cpulmonary pressure was just a measurement in a moments time. Wanted a repeat in 6 months if I was still symptomatic. Shortness of breath with little exertion can wait 6 months? I'm only 49. I appreciate the people on this site. I have gotten a lot of helpful information and suggestions, but mostly hope. Will keep you posted

Hi Still Pooped. I, also, have Mixed Connective Tissue Disease. Whew! I'm in my early forties, and became more short of breath. I just went to a Pulmonologist and was diagnosed with COPD. This doctor is ordering PH testing, and suggesting I go to a PH specialty clinic at one of the major universities near us. For now I have an inhaler.
I hope you got some useful info. following your testing. Also, I hope you are started on new meds, and feeling a little more comfortable. We will have to compare notes as we go. Wishing you comfort and rest. A.L.

Had my right heart catheterization and no pulmonary hypertension. Still short of breath, but very happy with the diagnosis. My rheumatologist was pleased but says I still am at risk. Any questions or concerns I should raise with my pulmonologist?

Just If U Show Sign Of RA Lung Disease Or Any Cystic Disease On CT Not That It Always Shows. My CT Doesn't Show What They Saw On Open Lung Biopsy. Something If Still Not Right If I R Still Short Pf Breath Could Even Be Heart But U Need To Know. Glad It Was Not Ph. Take Care TJ. Hi To Amy Glad To See New People And Hoping More Of The Old Ones Check In AsProdigy One Of Them Seemed Headed Towards Feeling Better And Hopefully She Is Just Too Busy Living Her Life To Mess With This.

It is nice to see people checking in. I was asked today by the OT I am seeing for my tennis elbow problem that came out of nowhere, if I had been tested for RA. He asked because of the flare-up nature of my muscle and joint pain. I have been free of significant pain for nearly 6 weeks now and always hope the pain is gone for good because no diagnosis on that either. But there are RA negative cases out there.

I agree with TJ, SP, if you are short of breath something is up. Same for me. My pulmonary pressure went up with exercise with my cath on Monday but other changes didn't happen so no PH. But something still isn't right because my oxygen saturations dropped terribly during the cath. Today I did an exercise tolerance test with an arterial line in. Will see if that tells us anything new. I told my pulmonologist to forget the deconditioned diagnosis. I didn't go from someone who could walk with no problem to someone who can't and now is worse off two years later and still on oxygen, because I am deconditioned! Especially after PEs and recently a DVT. I would rather be told they don't know then hear some lame answer.

Hi oygun sorry to say this but you might ask about a wash not quite ready to say Open lung biopsy. Thonk about it it doesnt always show what is there buy your options are natrowing. Take care Tj

TJ, I never thought of a wash. I guess I will see what my pulmonologist says. I do see my cardiologist this week in follow-up for my PVCs since the question of problems with my left ventricle were raised. I am so confused and having a hard time relinquishing control yet again. It is really hard to live with a mystery. But I am sure really hard to be in your shoes as well TJ. Always thinking of you.