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schmoowhale
@schmoowhale

Posts: 3
Joined: May 20, 2017

Many autoimmune diseases? Undiagnosed

Posted by @schmoowhale, May 19, 2017

Hi there!
I’m new to this website but it seems awesome!
I have been totally ridiculously sick for a few months now out of nowhere. I was a healthy 19 year old 4 months ago and now I can barely get out of bed some days. And nobody knows what’s wrong!
My symptoms are terrible heartburn and regurgitation that’s getting worse, joint pain, back spasms that are extremely disabling, muscle pain, nerve pain sometimes burning or pinching, Raynauds, swollen hands and feet, what I think and my GP believes to be dysautonomia (I can’t stand for very long or I have difficulty breathing and get lightheaded) I also have tachycardia that led to me being hospitalized to no avail. except to get heart medication to slow my heart rate. I’m also photosensitive, have little pin prick red dots absolutely everywhere, my legs get very purple sometimes, chronic cough and apparently a lung obstruction which leaves me constantly out of breath.

I think that’s the gyst of the bad symptoms haha but alas nobody knows what’s wrong.
Now I’m finding out my spleen and liver are swollen.
As far as tests go my ANA was 1:320 and I tested positive for autoimmune hepatitis but my liver enzymes are normal.

Been waiting months for an appointment with a new rheumatologist and I’ve just about seen every doctor I can.
So far the things they’ve been throwing around are CREST or another form of scleroderma, potentially also Lupus, autoimmune hepatitis and Dysautonomia.

Anybody have experience?
I’ve been eating a very clean vegan diet with lots of fresh organic produce and barely any sugar. I take anti inflammatory supplements and vitamins.
I don’t know what to do!

Advice with relief or on how to get a diagnosis would be much appreciated. I’m new to all this and am very overwhelmed.

REPLY

Hello @schmoowhale, welcome to Mayo Connect,

I’m sorry you are going through so much at your age. You have definitely come to the right place where you have a great and supportive community that will hopefully be able to help you find some answers.

Since you mentioned having a positive ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @kanaazpereira, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy. I hope they will join in with this discussion soon.

Here are a few links that may shed a little light on possible issues:

How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

What happens when you have a disease doctors can’t diagnose. TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

http://bit.ly/2nvf21H

John

Hello @schmoowhale! I would like to add a welcome too! Welcome to Mayo Clinic Connect 🙂

Reading other members testimonies and conversations is where you will find a lot of information and like minded topics. I see that John has already called in other members with similar conditions. While we wait for the others to join conversation here is another link- http://mayocl.in/2mZyFh1 for you to review with information on POTS from the Mayo Clinic website.

Was the concern for Lyme’s disease ever brought up?

@johnbishop

Hello @schmoowhale, welcome to Mayo Connect,

I’m sorry you are going through so much at your age. You have definitely come to the right place where you have a great and supportive community that will hopefully be able to help you find some answers.

Since you mentioned having a positive ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @kanaazpereira, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy. I hope they will join in with this discussion soon.

Here are a few links that may shed a little light on possible issues:

How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

What happens when you have a disease doctors can’t diagnose. TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

http://bit.ly/2nvf21H

John

Jump to this post

thank you so much for the information! Those videos were super helpful!

@jamienolson

Hello @schmoowhale! I would like to add a welcome too! Welcome to Mayo Clinic Connect 🙂

Reading other members testimonies and conversations is where you will find a lot of information and like minded topics. I see that John has already called in other members with similar conditions. While we wait for the others to join conversation here is another link- http://mayocl.in/2mZyFh1 for you to review with information on POTS from the Mayo Clinic website.

Was the concern for Lyme’s disease ever brought up?

Jump to this post

thank you for that link and the welcome! Lyme disease was brought up and we did pretty in depth testing at first since I had been exposed to a tick bite. But ultimately everything came back negative. I am considering doing the Igenex testing just to be sure, since it’s more accurate, but I’m not sure it’s worth the investment because insurance doesn’t cover it.

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