How Many Autoimmune Diseases Can One Person Have?!
I’ve just been diagnosed with my eighth autoimmune disease. Yes—eight. 😩
It’s beyond exhausting at this point. And to make things more complicated, they’re all rare. No one else in my family has any of these conditions, yet I keep hearing it’s “hereditary.” Really?
I read somewhere that it’s extremely rare for someone to have more than five autoimmune diseases… well, apparently I’m the exception. 🍀 Lucky me, right? 🙄
Does anyone know if Mayo Clinic ever does pro-bono consultations? I’m pretty sure they don’t accept my insurance, but at this stage I’m desperate for some expert input. 🫤
Any advice or shared experiences would be so appreciated.
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Did they confirm these through bloodwork? I am so sorry. I have Long COVID and it mimics symptoms from MANY other autoimmune diseases. I would suggest looking at
https://www.autoimmuneregistry.org/
There may be some resources there as well as research studies that they send to people registered. Hang in there!!!!
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4 ReactionsI would call the Mayo Clinic and ask if they take your insurance. You might be surprised 507 284 2511 is the main number.
Wishing you the best.
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3 ReactionsI am so sorry to hear. I myself have 2 autoimmune diseases. Autoimmune hepatitis and Clippers. Good Luck to you.
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1 ReactionThat’s my question, as well. Part of the problem is that when all you have is a hammer, everything looks like a nail: so each doctor will diagnose within their speciality, without seeing the bigger picture of the body in which we each live.
My diagnoses started with Crohn’s and arthritis many years ago - all the way through more types of arthritis, neurological disorders, and (most recently) a rare skin disease. High morbidity, low mortality. Almost all of them pre-Covid. Almost none of them appear in any other family members.
In other words, the longer I live the more I get, but they haven’t killed me yet, and often the treatments are worse than the illnesses (Meniere’s and MS symptoms mostly disappeared when I quit gabapentin and biologics).
Bear in mind that “auto-immune” is still Med-speak for ‘we don’t know.’ Most doctors won’t admit that, but the truth is that almost no one fully understands the immune system, and it’s easier to treat things than correctly diagnose them.
Most doctors use Occam’s Razor to diagnose things and use shotgun medicine to treat symptoms.
After all, as Finallen will probably agree, it’s really the symptoms that matter. Giving things names isn’t as important as being able to lead a relatively happy life.
But adding more drugs to the mix has definitely made things worse for me over the years. My body fights treatments like it fights illnesses.
I, too, would like to know if there is any chance Mayo would like to try to at least narrow it down for me: maybe 2-3 diseases would explain everything, and a real treatment plan could help.
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2 Reactions@robertmayo1
What treatment are you doing for the autoimmune hepatitis. I was diagnosed with that, but I have my doubts cause no any symptoms
Sorry for the late reply as I don't read this often. For hepatitis I take Azathioprine 50mg per day. Its worked for me. But once your on it your on for life. This drug calms down the inflammation in your liver but at the same time stops your immune system from working.
I also have another autoimmune disease called Clippers.
Good Luck
@shibumi Hi and welcome to Mayo Clinic Connect! I’m sure the members will have some answers or helpful tips for you.
Tomorrow, you can try calling GARD (genetic and rare diseases organization). Here is the website: https://rarediseases.info.nih.gov/ You can explain your multi-autoimmune diseases and now you think you may have a new one and you’d like a doctor recommendation. I hope you’ll stick with us and check for member responses tomorrow and best of luck to you!
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3 ReactionsThank you, Ma’am. I will look into this. The cycle just seems to never end: I see a doctor who sends me to another doctor who diagnoses something new and adds meds to a growing list until my system can’t take it anymore. So I stop until something lands me in emergency surgery and the cycle starts again.
But I will give it one more try. Thank you for your response and encouragement.