MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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Congestive Heart Failure

Livin-Right
Livin-Right
It's a long story, but i will try and get to my Question quickly. I have been misdiagnosed for years on all sorts of things, but I haven't heard anyone speak of this. I would and still get flu like symptoms, pneumonia or sinus I would think. Through the last 10 years, Xray's have showed what they thought was congestive heart failure. But on visiting a cardiologist, he would always say it was not CHF. I'm in that boat again today. I flared last week from what they thought was dropping the Prednisone to quickly. I started having trouble breathing AGAIN. I went to my Pulmonologist got a CT, 6 minute walk. get results tomorrow. but the xray showed CHF again. My gp says it is not but No one has given me an idea of why they think this or what on the xray is confusing the matter. Has anyone else had the mystery chf and the docs figure out why or what it is?
brunob
brunob
have they checked you for pulmonary hypertension?
Livin-Right
Livin-Right
Yes Maam, they have done 2 left and right side heart caths with neither showing PE Pulmonary Embolism or PH, Pulmonary Hypertension. With all the blood clots they have checked twice now. Blood thinners are working great, no more blood clots. But fluid management has been tough. My knee joints are separating and I may have to get them drained. Ty for trying to help me.
Livin-Right
Livin-Right
left something out. They have tried to get readings with an echo but because of the condition and size of my lungs cannot get a good result that way.
yayabeki
yayabeki
I am going through similar issue. I have a lot of chest burning,pressure, gurgling feeling in the left side of my chest then tightning ans pain doen my left arm yey classic signs of heart right?
Well i have had echo stress test ekg,etc..... all normal. I guess.
I got sick about 1 mth ago with prob pneumonia and havnt been the same since. Severe headache, chest pain , sob, sinus pressure , ears popping and buzzing and lleg pain. I ahve been on 40 m prednison but dont relly feel any better the scaries part is the chest thing am i having a heart attack or pleuisry ????
his is so hard to consume i dont know what i would do with out my faith in Jesus Christ
My Internist is know wanting to do EGD, thinking hernia maybe ??? reflux??? I dont agree but well see. ct sinuses,
no one has mentioned cardiologist or pulomary???
MToennis
MToennis
Congestive heart failure is caused by insufficient pumping function in the heart. It is measured by the ejection fraction or EF. You can get CHF from a previous heart attack that caused a sufficient enough damage, a heart infection, inheritance of diseases, sclaroderma, valve disease, and autoimmune disorders. They measure it my taking blood and checking the level of BNP (brain natraic protein). Dont think I spelled that right. You can have fluid in your lungs from other things, not just heart problems. You can have lung problems or infections and have a strong heart. You can have kidney problems and have a strong heart and have many of the same symptoms. Hope this helps.
Mary Ann
Livin-Right
Livin-Right
@ Mary Ann
Oh my. They have checked all of the above.
I'm wondering what information they could get from an x ray that would appear to an x ray tech to be called CHF yet Cardiologist/Pulmonologist/internal med doctors all know it is not. I have been getting this mystery x ray for over 10 years. And has never been found to be a problem with any one (heart, lung or anything else)
But that was one heck of an answer. I think I owe you a copay. Your always a help!
MToennis
MToennis
From an x ray they would find fluid in your lungs and measure your heart size which is often enlarged with CHF. That is about it!
Mary Ann
Livin-Right
Livin-Right
ok its turning into a rant.
Went to the retiring lung doctor today (about 3 more months)
I have been being treated for MCTD with Prednisone and cellcept
I have been being treated for the 60 lbs of fluid w laysix and Bumex
I was also diagnosed with Interstitial Lung Disease caused by MCTD
today the ILD is gone, amen , a scaring disease went away and now my only problem my pulmonogist sees is im overweight and smoked
both reversible , no perminate damage
i have about a month and a half before my short term runs out. It was not a problem to get the long term with all the conditions they had found. And maybe they were going to help me more than hurt me with these meds.
I can hardly bath, take a dump and wipe. walk up stairs with joint and breathing problems. but today im ok.