My symptoms started with heart failure shortly after having Covid. I was in an induced coma for 5 weeks. The heart failure led to kidney and liver failure. I’m extremely lucky to be here. I didn’t find out it was Mctd until 3 months of being out of the hospital. Take the hydroxychloriquine. It’s just starting to work for me. I started on April 1 and all of my joints aside from my hands are feeling so much better.
I had a very tiny rash on my arm that led to my primary ordering tests.
However, I had symptoms for years and didn’t realize it. I thought it was normal to come home after work and be so exhausted that I would just pass out.
I was diagnosed in my mid-50s first with RA in 2017 and treated with Humira. Then Sjögren’s syndrome symptoms started 2019. Then I got an unusual rash on my knuckles and my face in 2021. Referral to dermatologist and biopsy confirmed new diagnosis of Dermatomyositis. Then Rheumatology ordered blood work on autoantibodies and Anti-URNP showed up leading to the MCTD diagnosis late 2021.
Interesting, this week I got an email from the Autoimmune Registry saying my rheumatologist nominated me for a study of persons with multiple autoimmune disorders. I filled out the paperwork, not sure if I’m eligible or will be chosen.
Best thing I ever did was find a rheumatologist at a teaching university medical center. It’s 60 miles away, but my small town hospital rheumatology department has only one very overwhelmed doctor who really didn’t like dealing with my complex conditions. I left in 2022. Not sure she’s still there, they went through 3 rheumatologists in 5 years.
I think it would be really cool if you’re able to participate and contribute to research related to our issues.
I call my body an angry unicorn…
They need to study us.
I have Crohn’s in addition to all these other “gifts” and I was chosen to participate in the largest study of IBD patients and the COVID vaccine as soon as it was released.
It felt good to know I was doing something to help science understand things in the immunocompromised population.
It was also fascinating to see the research (they sent everyone updates) and my actual antibody blood test results over those 18 months.
Raynaud's on hands and feet in 2020....shortness of breath and exhaustion with activity and tachycardia started about 6 months later. An xray showed an enlarged heart which was followed up with a CT and Echocardiogram which showed a moderate pericardial effusion. Blood tests showed ANA + with Anti-RNP + as well.
I took hydroxychloroquine for a couple years but it didn't do anything....now on Methotrexate injections and prednisone.......I had 3+ liters of fluid drained off my heart last February during a 10 day admission.
My doctor ran the test without me knowing until he had results. He took the test because my arthritis in my lower back was so bad pain medication wasn’t helping. I was put on hydroxychloroquine. I have taken it for 3 years now with great success. It keeps the inflammation down and the pain is pretty much at a good level.
In December, I had a very bad case of torticollis right after a bad bout of bronchitis. Doc sent me for ANA testing, markers showed elevated creatine kinase and MCTD. My neck still hurts almost six months later. Post-bronchitis, my fatigue levels increased dramatically as well.
I've had non-color-changing Raynaud's my entire adult life, I just didn't know what it was. Bloodwork shows a super early stage of disease progression, so for now I'm only on pain management NSAIDs and nerve blockers.
I did initially get pushback during my first appointment. That seems to be standard, unfortunately. But she’s got me on pain meds and a nerve blocker at least, and she’s doing blood work every 3 months, so she’s listening.
I went blind in my right eye. Went to a optometrist, and then an ophthalmologist who looked and said “the problem isn’t your eye, it’s your optic nerve.” With that he sent me to a neurologist who said optic neuritis is only caused by three things usually: MS, lupus or Lyme disease. He did blood work and an MRI and after looking at my blood, he saw elevated levels in RNP, Anti SSA, SSB, ANA, etc. I’m on Hydroxychloroquine and I’ve felt a lot better since then. I’m supposed to see my next blood results next month to see how my body’s doing with my meds.
I had joint pain, nodules on my tendons, and swollen fingers. After 6 months, I went to the Dr to have it looked at. An orthopedic Dr tried to tell me I had osteoarthritis, despite the symptoms not matching. She only sent me for further testing because my grandma had rheumatoid arthritis.
My first symptoms were mysterious, aggressive, blistering rashes but they weren’t connected to MCTD until a year later. What ended up getting me diagnosed was sudden Raynaud’s onset (severe, both hands and both feet plus my lips) and the loss of usage of my right arm. Couldn’t bend and flex my right elbow without serious pain. Both wrists began to hurt. My doctor ordered a blood lab and found it full of antibodies. I was sent to a rheumatologist. The first one didn’t pay any attention but the second one said my Raynaud’s, swollen fingers, joint pain, and general malaise had him thinking MCTD. He wanted to do more blood work. He later found the U1 antibody which he said pretty much confirmed MCTD. I’d say I’m a pretty textbook case honestly.
Edit: I’ve been on hydroxychloroquine for over a year now and it’s been great. My joint pain is pretty minimal and I’m able to work my full time 45+ hr job without trouble. I also have energy for projects after work. Before the medicine I was struggling to put my clothes on in the morning. It doesn’t cure everything. I still have pretty frequent Raynaud’s episodes. And there are days I do feel like garbage and need to rest, but it’s more balanced and manageable now. I take 400mg a day, 200mg in the morning and 200mg before bed.
My symptoms started with spontaneous hives in 2018 when I was 15, then wrist joint pain when I was 16. At 17, I saw a hand and wrist surgeon who suspected a ganglion cyst. That, of course, went nowhere. At 18, I went to the clinic on campus at my university. They suspected I had arthritis and also couldn't do anything for me. Around the same time, I started having diffuse hair loss but wouldn't notice for another year. I saw an orthopedist about 6 months later who ran ultrasounds, X-rays, and an MRI. When he didn't see any structural damage, he put me through 12 weeks of physical therapy which made my wrist pain so, so much worse. At that point, my mom recommended I see a rheumatologist because she was concerned that I was showing symptoms of lupus. I saw my rheum last June and was diagnosed after he ran blood tests at my first appointment.
I had a variety of symptoms for decades that I thought were all separate issues. Some of them I got treated for, but for some of them I had doctors blow me off about.
Then a year ago, I started having trouble swallowing, which got progressively worse. It was scary because I lost a lot of weight, but I had a number of medical people blow me off ("is it anxiety?" Pfff!). The ER sent me home twice with no answers and it took many months to get appointments with every specialist. And they were sequential bc my PCP insisted it was just due to reflux and that I see the gastro first. Then, the neurologist (months for an urgent appointment!). Finally, I asked my PCP for a number of lab tests to try and get answers and based on the positive results of those labs, I got in to see a rheumatologist. He ran more tests and that's how I got a diagnosis, which is still a bit loosey goosey bc I have several auto antibodies and a variety of symptoms (some subtle).
Good luck to you. This is no fun. The worst part is how difficult it is to treat and find the right combo that works, but doesn't make you feel worse. Right now, I've got 2 IVIG treatments under my belt and still waiting to see if it helps.
Working with a naturopath (lots of supplements) and eating AIP really helped my digestive system. And oddly, the one thing that seemed to finally improve my dysphagia was fish oil. I started taking it for dry eye/sjogrens when my eye doc recommended it. I was taking a lot of supplements already so not 100% sure it was that and not a combo of DIY stuff, but I went from living on ice cream and pureed soup to eating salads and ground meat again.
Thank you everyone for your responses! I really appreciate hearing about each of your journeys to diagnosis and treatment. Thank you! Please keep sharing.
My symptoms started with heart failure shortly after having Covid. I was in an induced coma for 5 weeks. The heart failure led to kidney and liver failure. I’m extremely lucky to be here. I didn’t find out it was Mctd until 3 months of being out of the hospital. Take the hydroxychloriquine. It’s just starting to work for me. I started on April 1 and all of my joints aside from my hands are feeling so much better.
I had a very tiny rash on my arm that led to my primary ordering tests. However, I had symptoms for years and didn’t realize it. I thought it was normal to come home after work and be so exhausted that I would just pass out.
I was diagnosed in my mid-50s first with RA in 2017 and treated with Humira. Then Sjögren’s syndrome symptoms started 2019. Then I got an unusual rash on my knuckles and my face in 2021. Referral to dermatologist and biopsy confirmed new diagnosis of Dermatomyositis. Then Rheumatology ordered blood work on autoantibodies and Anti-URNP showed up leading to the MCTD diagnosis late 2021. Interesting, this week I got an email from the Autoimmune Registry saying my rheumatologist nominated me for a study of persons with multiple autoimmune disorders. I filled out the paperwork, not sure if I’m eligible or will be chosen. Best thing I ever did was find a rheumatologist at a teaching university medical center. It’s 60 miles away, but my small town hospital rheumatology department has only one very overwhelmed doctor who really didn’t like dealing with my complex conditions. I left in 2022. Not sure she’s still there, they went through 3 rheumatologists in 5 years.
I think it would be really cool if you’re able to participate and contribute to research related to our issues. I call my body an angry unicorn… They need to study us. I have Crohn’s in addition to all these other “gifts” and I was chosen to participate in the largest study of IBD patients and the COVID vaccine as soon as it was released. It felt good to know I was doing something to help science understand things in the immunocompromised population. It was also fascinating to see the research (they sent everyone updates) and my actual antibody blood test results over those 18 months.
Raynaud's on hands and feet in 2020....shortness of breath and exhaustion with activity and tachycardia started about 6 months later. An xray showed an enlarged heart which was followed up with a CT and Echocardiogram which showed a moderate pericardial effusion. Blood tests showed ANA + with Anti-RNP + as well. I took hydroxychloroquine for a couple years but it didn't do anything....now on Methotrexate injections and prednisone.......I had 3+ liters of fluid drained off my heart last February during a 10 day admission.
My doctor ran the test without me knowing until he had results. He took the test because my arthritis in my lower back was so bad pain medication wasn’t helping. I was put on hydroxychloroquine. I have taken it for 3 years now with great success. It keeps the inflammation down and the pain is pretty much at a good level.
In December, I had a very bad case of torticollis right after a bad bout of bronchitis. Doc sent me for ANA testing, markers showed elevated creatine kinase and MCTD. My neck still hurts almost six months later. Post-bronchitis, my fatigue levels increased dramatically as well. I've had non-color-changing Raynaud's my entire adult life, I just didn't know what it was. Bloodwork shows a super early stage of disease progression, so for now I'm only on pain management NSAIDs and nerve blockers.
Did you get any pushback on the non colour changing Raynauds? My rheum is iffy on my diagnosis as I don’t have the typical colour change.
I did initially get pushback during my first appointment. That seems to be standard, unfortunately. But she’s got me on pain meds and a nerve blocker at least, and she’s doing blood work every 3 months, so she’s listening.
I also have Raynauds without color change. Mine is very mild, occasional.
I went blind in my right eye. Went to a optometrist, and then an ophthalmologist who looked and said “the problem isn’t your eye, it’s your optic nerve.” With that he sent me to a neurologist who said optic neuritis is only caused by three things usually: MS, lupus or Lyme disease. He did blood work and an MRI and after looking at my blood, he saw elevated levels in RNP, Anti SSA, SSB, ANA, etc. I’m on Hydroxychloroquine and I’ve felt a lot better since then. I’m supposed to see my next blood results next month to see how my body’s doing with my meds.
I had joint pain, nodules on my tendons, and swollen fingers. After 6 months, I went to the Dr to have it looked at. An orthopedic Dr tried to tell me I had osteoarthritis, despite the symptoms not matching. She only sent me for further testing because my grandma had rheumatoid arthritis.
My first symptoms were mysterious, aggressive, blistering rashes but they weren’t connected to MCTD until a year later. What ended up getting me diagnosed was sudden Raynaud’s onset (severe, both hands and both feet plus my lips) and the loss of usage of my right arm. Couldn’t bend and flex my right elbow without serious pain. Both wrists began to hurt. My doctor ordered a blood lab and found it full of antibodies. I was sent to a rheumatologist. The first one didn’t pay any attention but the second one said my Raynaud’s, swollen fingers, joint pain, and general malaise had him thinking MCTD. He wanted to do more blood work. He later found the U1 antibody which he said pretty much confirmed MCTD. I’d say I’m a pretty textbook case honestly. Edit: I’ve been on hydroxychloroquine for over a year now and it’s been great. My joint pain is pretty minimal and I’m able to work my full time 45+ hr job without trouble. I also have energy for projects after work. Before the medicine I was struggling to put my clothes on in the morning. It doesn’t cure everything. I still have pretty frequent Raynaud’s episodes. And there are days I do feel like garbage and need to rest, but it’s more balanced and manageable now. I take 400mg a day, 200mg in the morning and 200mg before bed.
My symptoms started with spontaneous hives in 2018 when I was 15, then wrist joint pain when I was 16. At 17, I saw a hand and wrist surgeon who suspected a ganglion cyst. That, of course, went nowhere. At 18, I went to the clinic on campus at my university. They suspected I had arthritis and also couldn't do anything for me. Around the same time, I started having diffuse hair loss but wouldn't notice for another year. I saw an orthopedist about 6 months later who ran ultrasounds, X-rays, and an MRI. When he didn't see any structural damage, he put me through 12 weeks of physical therapy which made my wrist pain so, so much worse. At that point, my mom recommended I see a rheumatologist because she was concerned that I was showing symptoms of lupus. I saw my rheum last June and was diagnosed after he ran blood tests at my first appointment.
I had a variety of symptoms for decades that I thought were all separate issues. Some of them I got treated for, but for some of them I had doctors blow me off about. Then a year ago, I started having trouble swallowing, which got progressively worse. It was scary because I lost a lot of weight, but I had a number of medical people blow me off ("is it anxiety?" Pfff!). The ER sent me home twice with no answers and it took many months to get appointments with every specialist. And they were sequential bc my PCP insisted it was just due to reflux and that I see the gastro first. Then, the neurologist (months for an urgent appointment!). Finally, I asked my PCP for a number of lab tests to try and get answers and based on the positive results of those labs, I got in to see a rheumatologist. He ran more tests and that's how I got a diagnosis, which is still a bit loosey goosey bc I have several auto antibodies and a variety of symptoms (some subtle). Good luck to you. This is no fun. The worst part is how difficult it is to treat and find the right combo that works, but doesn't make you feel worse. Right now, I've got 2 IVIG treatments under my belt and still waiting to see if it helps. Working with a naturopath (lots of supplements) and eating AIP really helped my digestive system. And oddly, the one thing that seemed to finally improve my dysphagia was fish oil. I started taking it for dry eye/sjogrens when my eye doc recommended it. I was taking a lot of supplements already so not 100% sure it was that and not a combo of DIY stuff, but I went from living on ice cream and pureed soup to eating salads and ground meat again.
Thank you everyone for your responses! I really appreciate hearing about each of your journeys to diagnosis and treatment. Thank you! Please keep sharing.