(Closed) Autoimmune health scare…has anybody had experience?

posted 3 years ago in Emotional
Post # 2
Member
100 posts
Blushing bee
  • Wedding: October 2017

Me.  I’m ANA positive and show for Lupus.  I don’t have the joint issues or rashes, but I have pulmanary issues and developed Eosinophlic Gastritis last year.  Autoimmune runs in my family.  Short answer to everything… they just don’t know enough about autoimmune diseases.  I can’t tell you how many doctors I’ve been to over the last 5 years…. everyone has something different to say.  Just listen to your body. 

What I will say… if those are your only symptoms, you will be OK.  I know how you feel, I felt the same way when they told me too!  Like I’m broken.. but in all reality, my life didn’t change that much.  I’m not running long distances anymore, but my day to day life hasn’t changed any.  You get used to the pulmonary issue.

Just keep in mind all the doctors can do is symptom treat and steriods will become your friend.  I personally avoided the inhaled steriods they have been trying to give me, you can make that choice on your own.  But when I have a flair, predisone for a little bit and taper off… you’ll feel better right away.   

As for TTC, I have had issues there, but I’m not sure what it’s related to as I’m not symptomatic in my ladies parts.  It might just be a coincidence.  I’m doing IVF after my wedding in October.  Luckily it’s affordable here and we both make a decent living.

Post # 3
Member
97 posts
Worker bee

I have known several people who describe similar symptoms, and they have diagnosed with Postural orthostatic tachycardia syndrome (POTS).  

Post # 6
Member
5938 posts
Bee Keeper
  • Wedding: May 2014

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irishbride2018 :  
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candy9188 :  You are making me want to go back and get more testing done! I have Hashimoto’s and it’s turning out to be what you said, Candy. Doctors don’t seem to know much and I am going to have to try a lot of different things to feel “normal”. I didn’t know Autoimmune stuff was genetic. My mom has scleroderma and my aunt has rheumatoid arthris. So we all have different autoimmune things?? Another relative has lupus and has lead a pretty normal life, and has a child. But I agree, “autoimmune disease” are a couple of scary words!

Post # 7
Member
5938 posts
Bee Keeper
  • Wedding: May 2014

And PS, what kind of doctor do you see?

Post # 8
Member
97 posts
Worker bee

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irishbride2018 :  Sorry not trying to play doctor or anything, but your situation just reminded me of several of my close friends who were very active and then were hit with similar symptoms in their mid-late twenties.  Two of them went to so many doctors until they were finally diagnosed with POTS.  One of them was diagnosed first with lupus and then rediagnosed with POTS.  I hope your doctor gets everything figured out fast!! 

Post # 10
Member
100 posts
Blushing bee
  • Wedding: October 2017

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irishbride2018 :  I’ve had everything from the doom and gloom doctors to the Rheumatologist that laughed at me (I cried in my car after that).  I literally paid some guy $250 to make me cry.  Don’t let it get to you like me or end up paying thousands for just for a specific dx thinking that will help.  Just deal with things as they come and take care of yourself.  🙂

Post # 11
Member
100 posts
Blushing bee
  • Wedding: October 2017

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ButternutPoppy :  Yea, I didn’t really know it ran in the family until my brother was born with renal failure due to nephropathy and diabetes.  I was completely healthy until my late 20’s when I noticed I couldn’t run a quarter mile without stopping no matter how often I went to the gym.  I spent thousands and thousands doing testing that is inconclusive and expensive medications that didn’t really help much.  So after all that wasted money, I’m medication free and avoid running long distances.  I’ll have to look up POTS as I’m not familiar with that one.

They always want Lupus dx to go to Rheumatologist, but I found an immunologist that helped me.  

 

Post # 12
Member
1647 posts
Bumble bee

You should look up the paleo mom. She’s a scientist and knows a lot about autoimmune diseases. She has a protocol too that tons of people with autoimmune diseases use with lots of success.

Post # 13
Member
5938 posts
Bee Keeper
  • Wedding: May 2014

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candy9188 :  Ooo, thanks! I would’ve never thought of an immunologist. I’ll see if I can find one. Thanks!

Post # 14
Member
4239 posts
Honey bee
  • Wedding: August 2015

I have Crohn’s disease which is an autoimmune disorder on my digestive system.  It is no fun, and scary when I really sit down and think about what potentially could happen long term, but fortunately there has been a lot of progress on treatments for autoimmune diseases in the past 10 years.  I was diagnosed 12 years ago but my therapies that I am on now are fairly recent discoveries.

Post # 15
Member
2092 posts
Buzzing bee
  • Wedding: May 2015

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irishbride2018 :  I literally had the same experience as you, the unfortunate thing about the ANA is that it can be positive even if you have no autoimmune issues. I had the same symptoms as you, and went from being active daily to struggling to even go for a walk around the block. I waited two months to get in to a rheumatologist (long wait list) and by the time I was seen I was starting to feel a little better. My ANA was very high with a speckled pattern.

The rheumatologist ordered x-rays of several of my joints and found some various arthritic changes, erosions, and joint space narrowing (I’m only 24) otherwise the rest of my lab work was ppretty normal. I had thyroid, CBC, vitamin D, and various other lab work done. The only thing positive was for mononucleosis but it was inactive (I had it in high school). I’ve read that having mono in the last can trigger autoimmune disease, as well as stress. So I’m chalking up my symptoms to a mix of my history of mono along with arthritis. 

The lab work all sounds scary, but it doesn’t mean for sure you have any major illnesses. Just try to stay active, eat healthy, and reduce your stress. My symptoms started decreasing when my stress levels were more under control.

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