Multiple autoimmune diseases

Posted by denadet @denadet, Jan 5, 2019

I was wondering if there were others with multiple diagnosis. I have 8 autoimmune diseases and 6 other long term illnesses. I can’t find anything on the internet for that many. Is that a wierd thing or just they don’t study that kinda thing.

@mrsjaneorr

Upon my first diagnosis, Sjogren's, I was advised that having just one auto immune disease is rare and to expect them to find more. Yes, they did. Primary Biliary Cholangitis, Hashimotos, Gastroparesis, Ulcerative Colitis, peripheral neuropathy GERD, arthritis. My eyes are too dry and I can rarely drive, lost my teeth to dry mouth. I can't touch anything frozen with bare skin, I have to wear three pair of socks. Constantly exhausted. As long as I am rambling, here is the short story: I had a primary that knew I had issues and he nearly killed me. My TSH was at 78, I was in diapers (I am 56), daily nose bleeds, high blood pressure patch and 26 pills a day!!! I went to him for a year with diarrhea and nausea. He just kept telling me to take Pepto. Luckily I had PBC and I was able to talk to another doctor (pcp wouldn't refer me out, thought he was "all knowing"). The GI found the ulcerative colitis and the gastroparesis….these were stopping the absorption of my thyroid meds. The last time I saw him was a year ago, he'd pulled out his RX pad again. I stood up and said, "no thanks, I need a new doctor" and I walked away.
Found a new primary (who told me about the TSH at 78). He took the blood pressure patch off (I have always had low bp) and told me I would get better.
I looked at what I was taking, 4 of the prescriptions I was taking was for anxiety and depression. I was misdiagnosed with anxiety/panic attacks that were, in fact, gastroparesis so I weaned myself off of those meds. I was also on Gabapentin for Fibromyalgia, I quit those, too.
Now I take my Urso, levothyroxine and an antacid. About once a year I get a round of Prednisone.
I lost 50 pounds in 3 months! I KNEW I wasn't eating enough to support weighing 180!!! I am only 5 feet tall!!
I have had people say to me that the doctors know what's best for me. I will NEVER put full trust in anyone regarding my health ever again. If I don't look out for me then no one will.
Hang in there and learn all you can so you can make decisions or at least ask questions so you understand.

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Hello @mrsjaneorr, welcome to Mayo Clinic Connect and thank you for sharing your experience and why it's so important to be your own advocate for your health. It means a lot coming from a person sharing their own personal experience and how being a strong advocate for their health has helped them. Great advice!

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I too have experienced multiple autoimmune diseases. They are: Type 1 diabetes, Boop Pneumonia, and now Microscopic Colitis. I think being on a special diet will help. Gluten is my enemy and I am eating a Caveman's diet to heal my colon. I am hoping no more AI diseases. I've had it with an over active immune system. I played in the dirt as a kid, got dirty, and my immune system attacked dirt and everything I came in contact as a kid.I think that helped! In Peru, I was informed by a Shaman that our problem in North America is that we live in a too clean environment. My parents and grandparents had to be super clean. NOT GOOD! Now we spray ourself with disinfective spray and that's a problem. Kids today stay inside and don't play in the dirt. All they want to do is play on their computer gadgets and sit on the couch. In Peru, they dig in the dirt for food, grow their own food, eat healthy and kids play in the dirt. I believe in what the Shaman told me. We live in an antiseptic enviornment and it's destroying our immune system.

Playing in the dirt as a child helped. I even ate dirt. Just think if I didn't play in the dirt. I'd probably be more sick with more autoimmune diseases. Kids today who don't play and get dirty will probably have more autoimmune diseases than we have today. Sad state of affairs.

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@kidsmomof9

I am dealing with multiple autoimmune conditions and have several autoimmune situations in my family. I was just wondering if anyone else has been dealing with the same or was interested in any details

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@kidsmomof9 I have a few autoimmune-related conditions. It has made me a warrior as I navigate this journey! Mine include systemic lupus, fibromyalgia, a rare kidney disease, multiple myeloma, osteoarthritis.

Would you care to share your autoimmune conditions!
Ginger

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@kidsmomof9

I am dealing with multiple autoimmune conditions and have several autoimmune situations in my family. I was just wondering if anyone else has been dealing with the same or was interested in any details

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Hi, @kidsmomof9 I also have a few AI conditions. RyR2 (heart wall dystrophy), FKTN (Fukuyama limb girdle muscular dystrophy) both proven, and Gelsolin,(Finnish Amyloidosis, hereditary, systemic, not TTR) not formally proven yet, but the presence of FKTN and RyR2 make it an open and shut case. It's an awful thing to wish on anybody. The lengthy list of symptoms and signs keep me running to hospitals and doctors, although most of them are really not life threatening. But everything hurts, and now I have shingles on top of everything. I have a list of about 200 proven signs and symptoms all the way from Cerebrum Gray Matter invasion with Transmissible Encephalitis, to Purpura covered brittle toenails. Every internal organ is swollen.from brain to bowel. The combination I have is shared by about 1 of 2,000,000 persons, I am told.

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@gingerw

@kidsmomof9 I have a few autoimmune-related conditions. It has made me a warrior as I navigate this journey! Mine include systemic lupus, fibromyalgia, a rare kidney disease, multiple myeloma, osteoarthritis.

Would you care to share your autoimmune conditions!
Ginger

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Right now it is SLE, Antiphospholipid antibodies, Hashimotos, Sjogrens & Raynauds along with gastroparesis, bipolar disorder, GERD, Nutcracker Esophagus, Chronic Migraine and a history of PCOS and Wernicke's Encephalopathy. Three of our kids have type 1 diabetes and one daughter has RA. One daughter has PCOS and 2 of the kids have Hashimotos. Two of them had severe asthma when they were younger. The apparent dominant gene is also evident in nearsightedness (8/9] and color vision impairment. Such a fun experience to live in this cluster!

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I am dealing with multiple autoimmune conditions and have several autoimmune situations in my family. I was just wondering if anyone else has been dealing with the same or was interested in any details

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@kidsmomof9

I am dealing with multiple autoimmune conditions and have several autoimmune situations in my family. I was just wondering if anyone else has been dealing with the same or was interested in any details

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Hi @kidsmomof9, you'll notice that I moved your messages to this existing discussion called "Multiple autoimmune diseases" that @denadet started last year. Simily click VIEW & REPLY to scroll through past messages.

@gingerw @oldkarl and @kidsmomof9, you might find this article from Johns Hopkins as interesting as I did.
– Disease Development: How do autoimmune diseases unfold? https://pathology.jhu.edu/autoimmune/development

It states that "Three factors are at play in the pathogenesis of autoimmune diseases: genes, immune system, and the environment where the patient lives."
And
"Autoimmune diseases tend to occur in the same family (the so-called "familial aggregation)".

KidsMomof9 (do you have 9 kids?) Let me know if you'd like to find other discussions to connect with members who have the same conditions as you.

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@kidsmomof9

I am dealing with multiple autoimmune conditions and have several autoimmune situations in my family. I was just wondering if anyone else has been dealing with the same or was interested in any details

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Hi @kidsmomof9, There is another related discussion which you may be interested in reading through the posts here:

Multiple family members with autoimmune diseases….is there a link?
https://connect.mayoclinic.org/discussion/multiple-family-members-with-autoimmune-diseases-is-there-a-link/

Love your member username! Do you really have 9 kids? I'll bet it's fun getting together at the dinner table 🙂 I found out last year that one of my cousins who I haven't talked with in a long time also has 2 health conditions I have – polymyalgia rheumatica and small fiber peripheral neuropathy. Do members of your family share the same or similar conditions?

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@johnbishop

Hi @kidsmomof9, There is another related discussion which you may be interested in reading through the posts here:

Multiple family members with autoimmune diseases….is there a link?
https://connect.mayoclinic.org/discussion/multiple-family-members-with-autoimmune-diseases-is-there-a-link/

Love your member username! Do you really have 9 kids? I'll bet it's fun getting together at the dinner table 🙂 I found out last year that one of my cousins who I haven't talked with in a long time also has 2 health conditions I have – polymyalgia rheumatica and small fiber peripheral neuropathy. Do members of your family share the same or similar conditions?

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After reading these articles over and again (Multiple Autoimmune factors) it has come to my conclusion that stress from an early age and mostly in a constant state (for a very, very long time) is hugely important. I can go into much detail but it is still important to know that I am a layman and not a professional. It appears to be that there has been little investigation into this particular category. Most people afflicted with these autoimmune health issues are embarased to reveal same as it is so very intimate and revealng. And many other factors included, on and on. This is a very interesting and revealing part of the autoimmune factors that I have not thought they to be a part of. Good information for thought. Thank you for this. Peach

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@kidsmomof9 – I’m sorry you have all these AI diseases. It’s overwhelming. Our genes definitely play a role. I have some experience with AI disease, but I think my kids got a worse deal. When you are young everything looks good, but slowly they show themselves. I believe there is an interaction with the environment.

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@johnbishop

Hi @kidsmomof9, There is another related discussion which you may be interested in reading through the posts here:

Multiple family members with autoimmune diseases….is there a link?
https://connect.mayoclinic.org/discussion/multiple-family-members-with-autoimmune-diseases-is-there-a-link/

Love your member username! Do you really have 9 kids? I'll bet it's fun getting together at the dinner table 🙂 I found out last year that one of my cousins who I haven't talked with in a long time also has 2 health conditions I have – polymyalgia rheumatica and small fiber peripheral neuropathy. Do members of your family share the same or similar conditions?

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Yep! We are high school sweethearts. Married when I was seventeen and 1st kid when I was 19! We were completely blindsided when our oldest kids was Dx with T1D at age 11. No one on either side had it. The only other autoimmune connection is my grandmother who had RA and, I just recently found out, an uncle with sarcoidosis. My maternal grandmother had pernicious anemia, as do I, but I am not sure if that is autoimmune…

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@colleenyoung

Hi @kidsmomof9, you'll notice that I moved your messages to this existing discussion called "Multiple autoimmune diseases" that @denadet started last year. Simily click VIEW & REPLY to scroll through past messages.

@gingerw @oldkarl and @kidsmomof9, you might find this article from Johns Hopkins as interesting as I did.
– Disease Development: How do autoimmune diseases unfold? https://pathology.jhu.edu/autoimmune/development

It states that "Three factors are at play in the pathogenesis of autoimmune diseases: genes, immune system, and the environment where the patient lives."
And
"Autoimmune diseases tend to occur in the same family (the so-called "familial aggregation)".

KidsMomof9 (do you have 9 kids?) Let me know if you'd like to find other discussions to connect with members who have the same conditions as you.

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Yep! 9 kids! Thank you for helping direct me to the multiple autoimmune disease area. I am very interested in hearing about other issues along the same lines! I am finding out that our life of business as usual is rather bizarre to most people. It can only help to hear from people in similar situations. Thank you!

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