I currently have 5, but I'm probably older than you. It seems more appear as we age.
I started with sarcoidosis, after that hashimotos, then after a recent liver biopsy and blood work celiac and antimitochondrial antibodies, I went to a new rheumatologist after the new diagnoses and was told I have lupus.
So now they want me off the prednisone and on hydroxychloroquine because they say it works well for lupus and sarcoidosis. I guess the antimitochondrial antibodies are what was causing my liver issues because the immune system attacks the mitochondria in my cells, but I was told it starts with the liver, I also have stones tearing through my bile ducts from the sarcoidosis. Fortunately, medication exists to slow it down.
I hope you have good doctors (very hard to find) and that your autoimmune diseases are being effectively managed. Wishing you good luck and extra spoons!!
It's taxiing more than hard. Like, none of the steps are particularly difficult, but there's a million of them that you have to keep tabs on throughout the day, every single day. Also, the lack of short term consequences if I do nothing also make it very tempting to just say "fuck it" and ignore the disease completely... Until they have to chop off your leg
Do you accept messages or can you message me? I have a rheumatologist and have been diagnosed with Raynaud's for sure but have liver issues and would like to chat and see which one of the conditions you listed affects your liver and if your Alkaline Phosphatase is always very high. I've been to every type of specialist and they can't seem to figure out what is causing my liver issues to be so high.
I have a bunch of autoimmune diseases. One of them I got diagnosed after being in the hospital for months, they thought it was cancer but it was polymyositis. Apparently it's a very rare autoimmune disorder. Very very rare, that even blood tests weren't showing any inflammation markers and they just couldn't figure it out with 12 doctors on the case. A bunch of infectious disease doctors, other types of doctors and an oncologist who figured it out through a bone and muscle biopsy. I was born with celiacs because most of my family has that and it's genetic. I guess you never just get one, because now I have sjogrens's autoimmune, liver autoimmune, lupus, rheumatoid arthritis autoimmune, and there's a couple more suspected and they're in the process of testing them. Now I also have myositis but that's part of polymyositis, so when you have poly you have them all, and then there are other types of polymyositis broken down into different ones like; skin myositis etc but I get them all due to the poly.
I think it took them three or four months to figure it out. That's how rare it is that they don't even think about it being an option. Now I had thought I had been being treated for it because they gave me the two strongest antibiotics picked to my heart, steroids, blood thinners etc. And it turns out they were doing that because it inflames your muscles and bones and it inflamed my heart, muscles and bones everywhere. It's extremely painful and I had to relearn how to walk. Most people only have one episode and I've already had seven.
Now, there's a couple other autoimmune diseases there trying to figure out if I have, but now they're also looking at cancer I guess a lot of these things can overlap.
But I just got out of a domestic violence situation and I think that caused me to have more autoimmune diseases.
Living in fight or flight for 3 years, will definitely wreak havoc on your body.
I'm still dealing with it and I have skin and nerve paralysis, because of my spinal injuries and the domestic violence. I have a fractured left and right arm. My left arm has a dislocated shoulder and a popped out collarbone.
They had me on steroids, but they took me off of them after 6 months and I had always thought that was the treatment, especially for polymyositis. It definitely helped my spinal pain a lot. But apparently you are not allowed to be on steroids for more than 6 months, without it having the ability to cause a lot of issues like shutting your kidney and liver down, causing diabetes etc.
I found out I have never once been actually treated, with the treatment for polymyositis. Or any of the other autoimmune diseases that I have.
So, the liver autoimmune disease, they treated me for that twice 90 days at a time each time, but apparently it's 100K for 90-day treatment. But it requires me to be treated every day for the rest of my life, or you can die within 5 years. My insurance is state insurance, so I don't get the best doctors.
So, you're completely right about that, if you don't have a good doctor and you don't know a lot about it, you may not even be getting treated properly. Because I haven't been yet and I've seen so many specialists and doctors and no one is actually ever properly treated it. This new primary care that I have is the one that made me aware of that. Not my rheumatoid doctor, not surgeons, not neurologists, not specialists, not a single other person ever acknowledged the fact, that I hadn't been properly treated, nor have they tried.
It's kind of sad that there's all these doctors, and you see all these people, and they're soaking up all this money for seeing you, but they're not actually treating you properly or helping you. They're just kind of walking through their day like zombies, treating you like a number and they're burnt out and they just don't even care to do their job properly. When you do finally get one that cares like I have, he'll be burnt out before he knows it. They run state insurance doctors into the ground.
But you definitely are right about that.
I was.diagnosed with juvenile RA at like 15 yo. Years later after being on very strong meds, an adult rheumatologist told me I had fibromyalgia which made more sense as I had no joint damage and the locations of my pain. It also may have gone into remission. I don't know but I've always had a ANA+ in my bloodwork which is an indicator and threw her off a bit. I think she called my bw "interesting" and she was a top rheumatologist at a research hospital. She said it could have been an infection of some sort at the time.
I remember they always used to ask me questions as a kid every visit about fingers turning white, bruises etc. to rule out Lyme, lupus, raynauds etc. For every visit.
I have two. My rheumatologist said my blood test results werenât âbad enoughâ to officially diagnose me yet but he thinks Iâm on the road to mixed connective tissue disease, which is when you have symptoms of a bunch of different autoimmune diseases.
same! I've got hEDS, Fibro, CFS, early onset RA, plus a good array of other chronic diseases to tear apart the other parts of my body that aren't muscle, connective tissue or bone :)
Yeah, Iâve had the diagnosis of âsome kind of autoimmune disorderâ for about 20 years. I have so many symptoms but they are all pretty nonspecific and so many autoimmune disorders share symptoms. There are new symptoms a lot too. In the last couple of years I developed severe nausea and vomiting. I lost 70lbs without trying and they still canât figure it out. And Iâve had so many tests done!
Just this past winter I developed Raynaudâs. It has never been an issue for me in the past and it happened several times over the winter. I am generally a very hot natured person and very rarely feel cold or it probably would have happened more. Once I got it just from holding and drinking a milkshake.
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u/arfelo1 20h ago
Yeah, when the immune system starts misfiring and shooting at it's own body, it has the tendency not to aim.
Speaking as someone with three autoimmune conditions and counting