Garndner did they do a pulmonary function test on you yet? hugs marilyn

Marilyn,

Yes, they did a pulmonary function test on me the same morning that they did the echocardiogram. The PF test was supposedly normal. The echocardiogram was not. And then I got scheduled for a metabolic stress test with a acardiologist, and that was not normal at all.

All of this information is great. I just had a chest x-ray, the report from last year indicated a mild cardiomegaly, the report from last week indicates, a normal size heart, but is indicating a prominent fat pad right heart border. No acute changes seen. But he didn't see the fat pad or didn't mention it in 2009. Weird? Same radiologist read them both. Thus, I am going to have an echocardiogram and a chest CT.

All of this information is great. I just had a chest x-ray, the report from last year indicated a mild cardiomegaly, the report from last week indicates, a normal size heart, but is indicating a prominent fat pad right heart border. No acute changes seen. But he didn't see the fat pad or didn't mention it in 2009. Weird? Same radiologist read them both. Thus, I am going to have an echocardiogram and a chest CT.

I picked up the report on the chest CT - tested because of SOB, benign hypertension and family history, result was no significant intrathoracic pathology, but they incidentally noted granulomatous changes in liver and spleen. I get the results of the echo on Friday. I would appreciate anyone's thoughts on the granulomas.

Hmmm. Granulomas. Here's a good wikepedia article on them: http://en.wikipedia.org/wiki/Granuloma . Notice the section on sarcoidosis shows granulomas in both liver and spleen. Ask your doc about the possibility of sarcoidosis.

Also note that sometimes nodules that show up on scans are not actually granulomas. It's possible only a biopsy would tell for sure.

Thanks Gardener21! I am a little suspicious too. The cardiologist thought as to the granulomas, maybe it was fungal in origin, he asked me if I had ever lived in CA, San Joaquin Valley, funny but I did live in Southern LA in the 60's for a couple of years, Arizona for about a year, but I don't think that is it. He told me my echo was okay, he told me the right ventricular systolic pressure is elevated at 30-40mmHg., I have a trace of aortic regurgitation, mild pulmonic valvular regurgitation and mild mitral regurgitation, right atrium mildly dilated (common) and mild pulmonary hypertension, but he said practically everyone has this and not to worry about it. My rheumatologist is on vacation, but I faxed him my latest medical tests, and asked him if he thought it would be worthwhile to have an ACE test, so I am waiting to see what he has to say after he gets back from vacation. I am sooo wiped out!!! Thanks for your thoughts.

Hi Gardener 21, I googled Scleroderma and Diastolic Dysfunction and found this forum. My recent echo seems to have similar results to yours. I also have CREST which was diagnosed over 20 years ago. A few years ago I had an Echocardiogram done and they found I had a moderate aortic regurgitation. I was not really getting any symptoms, however, I have just been overseas on holiday and found that walking up a flight of stairs or a street with a slight hill etc was causing me problems. I had to stop a lot and get my breath back. On return I told my GP who ordered a further echo. I got the results today and in the summary it basically says there is evidence of diastolic dysfunction with moderate to marked aortic regurgitation and mild mitral regurgitation. There were also raised E-/A wave velocity ratios. I also read the Wiki report. It is all rather scary and daunting isn't it. When I told my husband the results, he said "are you going to die" I said well we are all going to die sometime! Although it is not a nice thing to have, it was nice to find someone else with similar problems who also has Scleroderma. It also said it was all in keeping with mild pulmonary arterial hypertension. Can I ask what your BP is? My systolic rate is usually normal, but my diastolic rate can be rather low, sometimes 56. They say you don't have to have high blood pressure to have this problem of diastolic dysfunction. Anyway, it was great to find this forum.

Hi, atm63,

My blood pressure has always been very low and the diastolic, like yours, still is. Your next step is probably to get to a cardiologist. He will probably want to do a metabolic stress test. Mine showed my peak VO2 to be 12.96,

Sorry, but the upload process cut off the last part of my reply. The rest of it is:

where the predicted VO2 Max for my age and sex is 25.2. So to me that doesn't sound so good. But I am managing without oxygen, and my ankles are only very minimally puffy. I do notice that when I walk my treadmill I have to watch my pulse like a hawk or it soars to 148 before I know it. That tends to happen after about 20 minutes of walking at only 2 mph at an incline of 2. The cardiologist says to aim for a treadmill pulse of between 115 and 127, because he says my heart muscle is switching into anaerobic mode at 127. Apparently he got this information from the metabolic stress test. It's the information I wanted in order to feel safe in using my new treadmill, which I ordered for Christmas just 2 days before receiving the news of my heart dysfunction. I got the treadmill because with Raynaud's I can no longer tolerate walking outdoors in wintertime.

I would suggest anyone with Raynaud's, likewise get a treadmill, and if you have heart dysfunction, have a metabolic stress test so you can know what a proper target pulse rate is for your particular case.

As I've said before, my scleroderma doc has, since I don't have skin hardening, nor pulmonary fibrosis, diagnosed me as only having "undifferentiated connective tissue disease with features of scleroderma". So, aside from fish oil, and alpha lipoic acid, I'm getting no treatment to reduce inflammation!

Apparently the official diagnostic criteria for scleroderma do not recognize such things as Raynauds, esophageal dysfunction, telangiectasias, and myocardial fibrosis, all of which I have. I think the old 1980 diagnostic criteria are in serious need of updating to recognize these things, instead of relying so heavily on pulmonary fibrosis with the complete ignoring of myocardial fibrosis. I wonder how many people with hugely positive anticentromere antibodies die each year of myocardial fibrosis because they had no skin hardening and therefore couldn't seem to get treatment! Meanwhile, I have all sorts of signs of vasculitis that can be caused by the anticentromere antibodies: the Raynaud's, erythromelalgia, the infrequent episodes of phlebitis, neuropathy, loss of hair from the limbs, corkscrew conjunctival blood vessels, tiny red blanchable dots, each surrounded by a halo of depigmentation. And waking up multiple times a night to the sensation that my entire body is on fire! Now I've been referred to the vasculitis center of our nearby university hospital, so I guess that's my next step. One more doctor who will probably pass the buck. And meanwhile my heart is slowly dying. So frustrating!

Got one for yall...I have been trying to figure out what has been wrong with me for about 5 years now. I look like stay puff the marshmellow man. I can hardly move now, my joints feel like I am poking needles in them. Hands go numb, been diagnosed with pulmenary hypertension about two years ago. We have just now put the puzzle pieces together, they tested me for arthritis. Ana levels showed I could have lupus. Further test show Scleroderma. Now waiting to find out just how bad it is. Taking hydroxychl it has seemed to help, but can't shake the side effects, taking pain meds that knock me out more. Does this get any better. I am married and have a life. Seems like it's on hold now

Hi, Rondadreams2,

I am not sure from your abbreviation what that is you're taking. Is it hydroxychloroquine?

yes, it's the malaria medication...so I was told. My medical doctor put me on this to relieve some of the symptoms. I just couldn't take the pain

Ah, yes. The brand name of that is Plaquenil, and it's often prescribed in autoimmune disease. Sometimes I wonder why no one has prescribed it for me. Actually someone did suggest it once long ago, but I refused it then.

But I also have monoclonal gammopathy, which relies on an active immune response against tumor stem cells to keep from converting to multiple myeloma, a cancer of plasma cells. So I think the docs now are wary about doing anything to suppress my immune system.

So I'm gritting my teeth to bear the pain. I guess some day I'll get so I can't bear it any longer and beg for immune suppression.