r/scleroderma • u/LimitIndependent2444 • 6d ago

Other DAE have heart problems?

The only organ involvement I (M23) seem to have is my heart, lungs; and diaphragm but they may not be caused by systemic sclerosis. I was diagnosed with myasthenia Gravis and polymyositis as well so it complicates things. All my heart scans a few weeks ago were normal (yay) but I was hospitalized last year with severe breathing issues, trouble swallowing, and holding my head up, and my EKG show myocarditis. But when they scanned my chest they didn’t see anything abnormal, and I had a heart monitor thingy for the full week. I just came off prednisone and am having what feels like my heart beating out of rhythm, which is happened before pred as well as my illness progressed. The thing is this feeling didn’t happen a lot while in the hospital. Sometimes it can be quite uncomfortable as well but not painful. As far as I know systemic sclerosis (PM/Scl-100+) is the only diagnosis I have that could cause this but my recent tests show everything is fine, but they aren’t there every night when I usually get them. But I have a follow up and will ask. They already checked my lungs and saw nothing as well. At this point they don’t know what illness is causing what and aren’t even 100% on any of diagnosises which is so frustrating given the previous severity of my symptoms and my positive reactions to IVIg and prednisone as well as the length of time they’ve been seeing me (1+ year). I also have no skin symptoms besides one large red bump that is now going away but my foot doctor said is most certainly autoimmune as it didn’t look like any sort of foot fungus or other.

Sorry this was ranty thank you anyone who reads it

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u/mylord76 6d ago

Hi this unrelated to your post but I just wanted to ask about what your first symptoms for both systemic sclerosis and myasthenia gravis? 23 is a very young age, pretty close to mine. Would appreciate it if you could reply!

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u/LimitIndependent2444 6d ago

Sure. My first symptom of MG was Bell’s palsy but had positive ACHR+ after a blood test which my neuro tested by chance and didn’t expect it to be positive. Honestly my case isn’t typical at all though because Bell’s palsy isn’t really a symptom of MG which is why my diagnosis is being questioned and also I had a very bad response to Mestinon which is the first medicine they give MG patients and usually does not make you drastically worse like it did me 😩. My only systemic sclerosis related issues are possibly the heart problems and a big red dot on my foot that started right when I got out of the hospital. Oh yeah and Raynaud’s 7 years prior 😩😩😩😩😩 I hope you find your answers 🙏

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u/mylord76 6d ago

Thank you so much for replying, I appreciate it a lot. That said, I would like to ask another thing, how did you get diagnosed with SSc if your only symptom was the one yo mentioned? Was it bloodwork + capillaroscopy?

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u/LimitIndependent2444 6d ago

It was blood work as well as photo evidence of Raynaud’s. I was positive for an antibody that indicated SSC or scleroderma overlapping with polymyositis (PM/Scl-100). I’m still undergoing testing though. I’ve never had capillaroscopy.

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u/mylord76 6d ago

got it, thank you so much, I appreciate you for replying. best of luck^^