Does anyone else have MCTD with systemic sceladerma? Anyone else?

Have looked into Google/scholar.
Also check a number of medical sites
Wishing you the best

Call doctor back and get back in so you ask your questions. Contact the nurses line and say you have questions and they are very important to you. After all, we're just the patients. I have systemic scleraderma with my Lupus. But mine is attacking my stomach. Have had 4 bleeds in 2.5 years. Last one was in February. Was diagnosed after my first bleed 3 years ago where my gastrointerologist found I have watermelon stomach.

Please feel free to message me. Praying for you. Not an easy diagnosis at all.

Today, I had to remind my doctor again that I have Lupus and Addison's disease, and that NSAIDs should not be prescribed for inflammation. I also carry the GS191 genetic marker, which increases my sensitivity to these medications. NSAIDs cause significant issues for me, particularly in the stomach and small intestine.

@grandmal65 Hi and thanks for reply how do you know you’re systemic sceladerma is in overdrive? And may I ask what are your CK levels. And is the stomach the only troublesome area? Thanks again I’ll be wiring n reply

@sonnyforee10 I'm unfamiliar with MCTD. My lupus does flare up off and on. My systemic scleraderma is bad. I have very cold hands and feet. I have to wear socks all day and night. Gloves I do occasionally just because I am busy during the day. Lots of doctor appointments. Currently doing physical therapy for my spine. The whole spine. Getting ready for a 2nd neck surgery. Nerves are moderately being pinched in C6 and C7. Had previous surgery last year at C4-C5. Wish me luck!

Oh my. I do wish you lots luck. Does your back hurt? That’s my biggest problem with all this my lower back left side of back will just burn I have to go sit down. It sounds like you’re might be worse than mine right now. I’ll be praying for you and a fast recovery. Please keep me informed how your surgery goes. When were you diagnosed with everything? So I’m assuming that’s what’s going on with my back pinched nerves. Thanks for info and stay in touch. Thanks for you’re reply

@sonnyforee10 hi me again did the first surgery work on you’re back? Also when were you diagnosed with systemic scelederma? Thanks. Wishing you the best with you’re surgery

@sonnyforee10 the 1st surgery was awesome. Stopped all the pain from my neck across my upper back and down both arms. Pain was gone after surgery. Was also able to swallow better. So I am praying this next surgery will work as well.

I was first diagnosed with Fibromyalgia and Reynauds about 20 years ago, then within a year was diagnosed with Lupus (SLE) type. Then 4 years ago diagnosed with Systemic scleraderma after my first stomach bleed where they found I had watermelon stomach after doing the endoscopy. I keep getting more crazy things going on all the time.

@sonnyforee10 my first surgery did work. I had no pain except for at the surgery site. But the past 3 or 4 months the pain going from neck down top of back in to my shoulders. So the doctor did another MRI. So from C4-C5 is fine but C6-C7 is now messed up along with T1 - T2.

Systemic scleroderma diagnosis came about 3 years ago. The gastric bleed led to an EGD and GI doctor found that I have watermelon stomach. It's where your blood vessels are directly seen inside the stomach and not embedded in the tissue like normal. So food can scrape and inflamed them and make them bleed. So no spicy food, or alcohol or fried food. I seriously have to watch what I eat. Note: watermelon stomach actually has stripes like watermelon. Look it up, it's crazy. After my Rheumatologist got with the GI doctor she was going through all my health issues and diagnosed me. I take a drug called Bentyl which helps with my stomach pain. Heartburn is a chronic issue for me. I also get a chest and abdominal CT every 6 months to check my internal organs because of the systemic scleroderma. I have some fibrous tissue in the left lower lobe of my lung and swollen part of my heart that they have to watch. I'm going through a lot. I'm at the point of rolling my eyes, and just shrugging shoulders to say, "what's next, and why not"?? Seriously thinking of donating my body to hopefully help medical school doctors learn from these conditions.

@grandmal65 wow you have been thru it all!! I must say I’m not looking forward for mine to progress I was diagnosed with systemic sceladerma 9 months ago and mctd a yr ago. I do follow a special diet about 21 days out of 30. My dr said I could cheat about 1 a week. I hope she’s right. Right now I have no stomach issues and I don’t want any. I feel so bad for you!! Do you have Raynaud also? I do and it’s worse in the toes. We live in Ohio so cold is just around the corner. Not looking forward to it. I also have a small pericadal effusion of heart. It sounds like we are both are going to go thru a lot of things. Believe me I know about shrugging g your shoulders. I’m like how many auto immune diseases can one have? I already donated my body to wright Patterson medical school. If I can save 1 person from this hell it’s worth it. My husband did the same. Please let me know how your surgery goes and I’ll be praying for you’re ❤️‍🩹. I’m.looking up watermelon stomach and it sounds crazy. Again stay in touch and good luck with everything🤗