1. < Autoimmune Diseases

Multiple Auto-immune Diseases ?

Posted by annelia @annelia, Aug 11 5:42pm

Hello .. I am new here so diving right in looking for others that have multiple auto-immune diseases .
Addison's, RA, fibromyalgia, tinnitus, alopecia, degenerative disc disease, A-Fib, MVP minor, osteo- arthritis, diverticulosis, Raynaud's
It just seems to go on and on but some how ? it would help to know if there are other people out there that have so many tag along diseases. Strangely enough I had thyroid problems, hypothyroid, for over 18 years and suddenly it just STOPPED .. had been taking Synthroid all that time and then the endocrinologist said I could stop taking the Synthroid, boom, just like that. How weird is that ?
In any case .. if anyone is out there that has or is experiencing anything similar please reply .. Is Addison's (Primary, auto-immune) really that rare ? I've only had one crises so far, 2010 and wow, I didn't realize how dangerous that was (caused by gastro bug) Thanks for any replies.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

annelia | @annelia | Aug 12 9:49am
In reply to @windyshores "@annelia my kid had a fistula. Neurointerventional surgery involved putting metal coils in the brain, using..." + (show)
@windyshores

@annelia my kid had a fistula. Neurointerventional surgery involved putting metal coils in the brain, using wire inserted in the groin. Do you have pulsatile tinnitus from your fistula?

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Hello there ... YES ! I have the "heart beat" along with the tinnitus ... it can be maddening .
I have seen a neurosurgeon but I have to go through more testing to see if it is indeed a "cavernous fistula" , I think that is what they called it .. but if I can live with it I will .. surgery could do more harm than good to me especially with the Addison's.
I'm so sorry your little one is going through that .. you must be stressed out.

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annelia | @annelia | Aug 12 11:24am

Hello , no I haven't heard of NORD .. I just typed it in and it looks interesting. Thank you for suggesting it !
I'm sorry you have had such a hard time with your providers .. Our Canadian system can be very slow .. it is severely understaffed .. and there are always the "god complex" doctors that make you want to scream.
I have had all of these diseases flow in like a raging river and I'm just trying to stay afloat .. but yes the Addison's it is a tricky one .. you can feel like you are a zombie a lot of the time .. we just need a bit of comfort from our doctors and not be afraid of asking questions . I hope you get what you need from yours !

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annelia | @annelia | Aug 12 11:59am
In reply to @becsbuddy "@annalia. You have all these AD and they’ve all been diagnosed? WOW! And this all started..." + (show)
@becsbuddy

@annalia. You have all these AD and they’ve all been diagnosed? WOW! And this all started with hypothyroid? I’m sure that other members will turn up and have similar stories to tell.
And you’re new to Mayo Clinic Connect! Welcome!
There are lots of discussions about all the different AD diseases that you have and you may find them very helpful.

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Thanks very much !

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annelia | @annelia | Aug 12 12:05pm
In reply to @windyshores "@annella I have lupus and high antibodies for scleroderma. One of my grown kids has type..." + (show)
@windyshores

@annella I have lupus and high antibodies for scleroderma. One of my grown kids has type 1 diabetes, celiac, seizure disorder, and lupus with joint pain, alopecia, Raynaud's etc. She has had most of these since childhood or teens. We both get really sick in the sun. We have been told that one autoimmune disorder makes you more likely to get another.

Some of the things you list, I share, but don't consider them autoimmune. I have afib, osteoarthritis, degenerative disc disease, tinnitus. A bunch of other things.. At a certain age, a lot of us have a long list, unfortunately. If you are young like my kid, that is even worse. If you have been told these are autoimmune, I would be interested...

Addison's, RA are autoimmune of course, and hard to deal with. Raynaud's can be part of an autoimmune disorder, or not, I have been told.

Sorry you are suffering. I think it helps to ask doctors to differentiate health issues you suffer with that aren't autoimmune and those that are. For treatment purposes. Of course it can be hard to tell since autoimmune disorders mimic so many other problems. Do you have a good rheumatologist

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Yes I think she is very compassionate although the last visit was not quite as good as my others .. doctors can have bad days too ? LOL
Right now I have attention on the two major things .. Addison's and the fistula behind my left eye .. waiting for more tests to find out what the neurosurgeon suggests .. I think I could live with it frankly .. surgery could make everything worse for me (if I survived it , LOL)
Thank you for your insight .. I'm 67.. so I'd rather enjoy what is left of my time here on earth rather than contend with the fall out of a bad choice.

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meg8 | @meg8 | Aug 12 1:21pm

Yes, I have multiple autoimmune diseases. It started with a diagnosis of fibromyalgia, then scleroderma, raynauld's, sjogren's, . I also have interstitial lung disease. and then, there's vasculitis. Recently, I have been diagnosed with some type of inflammatory disease. I have other diagnosis that are not autoimmune.
Wishing you the best/Margaret

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1 reply
annelia | @annelia | Aug 12 1:51pm
In reply to @meg8 "Yes, I have multiple autoimmune diseases. It started with a diagnosis of fibromyalgia, then scleroderma, raynauld's,..." + (show)
@meg8

Yes, I have multiple autoimmune diseases. It started with a diagnosis of fibromyalgia, then scleroderma, raynauld's, sjogren's, . I also have interstitial lung disease. and then, there's vasculitis. Recently, I have been diagnosed with some type of inflammatory disease. I have other diagnosis that are not autoimmune.
Wishing you the best/Margaret

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Thank you for your reply Margaret .. no one ever has just one disease any more.
Hope you feel better

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1 reply
slkanowitz | @slkanowitz | Aug 13 7:32am

Frances, I have trouble deciphering some acronyms, so what is PI? And may I ask what treatment you’re referring to that might be lifelong?

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casey1002 | @casey1002 | Aug 13 6:51pm

👋 Hi-
I’m at Mayo doing the same thing for so many autoimmune diseases. Half of the things you listed I also have on top of many other things. Hope all goes well.

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 13 8:04pm
In reply to @casey1002 "👋 Hi- I’m at Mayo doing the same thing for so many autoimmune diseases. Half of..." + (show)
@casey1002

👋 Hi-
I’m at Mayo doing the same thing for so many autoimmune diseases. Half of the things you listed I also have on top of many other things. Hope all goes well.

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@casey1002 Welcome to Mayo Clinic Connect! I hope that your time at Mayo is very productive for you . Take good notes!
What brought you to Mayo Clinic? Did your doctor refer you? And what autoimmune diseases do you have already that your hoping the doctors can help you with?

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1 reply
casey1002 | @casey1002 | Aug 13 8:38pm
In reply to @becsbuddy "@casey1002 Welcome to Mayo Clinic Connect! I hope that your time at Mayo is very productive..." + (show)
@becsbuddy

@casey1002 Welcome to Mayo Clinic Connect! I hope that your time at Mayo is very productive for you . Take good notes!
What brought you to Mayo Clinic? Did your doctor refer you? And what autoimmune diseases do you have already that your hoping the doctors can help you with?

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@becsbuddy I haven’t been helped much yet, 1 Dr missed my appointment, can’t get anyone to give me my results or explanation. No notes to take as no one is giving me info unfortunately. Dr referred me for connective tissue Scleroderma, kidneys, lungs, heart, nerves and many more Tumors and lesions in my esophagus from severe acid reflux / GERD, flu like every day
It sucks. Thanks for being a volunteer and helping others. Best

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