Autoimmune Disease? Adult Onset Still’s Disease? EBV?

Posted by ske22 @ske22, Feb 11 8:10pm

Hey guys,

I’m a 30 yo female, I’ve been struggling with flare ups of repetitive symptoms for YEARS…took a long time to get someone to really listen since my blood work always seems to be mostly normal from what I’m told.

Finally had a doctor that suspects autoimmune disease, and I was supposed to have my first appointment with a rheumatologist today (finally), but of course because the universe is conspiring against me they had to cancel it. Rescheduled for Monday. I’ve waited years, I guess I can wait a few more days 😩

BUT, I was doing more endless research, and I came across Adult Onset Still’s Disease. It seems to match many of my symptoms, and I know it is autoinflammatory, not autoimmune, but I was wondering if anyone has any experience with it?

My ongoing symptoms primarily include (in random recurring events):

•Red/pink splotchy flat rash, mostly on trunk and thighs, not itchy, no pain, I don’t even know it’s there until I happen to see it.

•Low grade fevers

•Chronic fatigue

•Joint pain and crepitus, particularly in my hands/wrists, ankles, hips, and back (back may be due to other things)

•Swelling of the legs/ankles/feet

•Newer symptom: Spot rashes that are circular and raised, extremely itchy, always come and go in the same spots (usually elbows, inner arm, inner thigh), not red or colored, tend to leave temporary lighter patches once they clear up

•Newer Symptom: Night Sweats

Also an assortment of other smaller things that may or may not be related, but those are the main things.

Also, my mother has Multiple Sclerosis, and I am an EBV carrier.

I’ve been severely ill and/or hospitalized a few times with no real answers. Most recently last year. Would love some input and ideas to take to the rheumatologist!

You may want to try keeping a log of every chemical that could be coming into contact with your body, along with a food journal of what you eat and when.
I'm talking down to the level of which detergent you use to wash with, soaps and body creams, even fabrics etc. Maybe try different brands to see if there is any chemical sensitivities or allergies you may have. I'm going to take a guess that if you saw an allergist and they did some skin sensitivity tests, that you'd be sensitive to a lot of different substances. Trying to correlate so many variables to see if any might be causing or contributing to your problem is difficult, but, you may find some clues to help doctors narrow down some symptoms. Also, food allergies, (there are some gluten sensitive blood tests now etc.)
Good Luck!

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@ske22 Welcome to Mayo Connect! I hope the rheumatologist will be able to help start narrowing down your health concern. Like @dinoman said, keeping a log of things you are in contact with internally and externally, will help everyone! At least the appt was moved only a few days, not weeks or months, right?! This gives you an opportunity to get everything down on paper to hand over to the dr and place in chart. Keep a copy for yourself, to write notes on.

Please come back after your appointment, and let us know what they say, if you care to share.
Ginger

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@ske22 It must have been incredibly frustrating to not feel heard and to not have a diagnosis for so long. The diagnosis is the first step.

Below I have posted a previous related discussion where members like have discussed this topic before. You may want to scroll through the comments and look for any useful information.
– Stills Disease https://connect.mayoclinic.org/discussion/stills-disease/

@johnbishop located a Mayo Clinic video that may be informative. It is linked below as well.
Sharing Mayo Clinic – Mysterious Symptoms and then…Diagnosis: Still’s Disease: https://sharing.mayoclinic.org/2012/02/17/mysterious-symptoms-and-thendiagnosis-stills-disease/

@dinoman and @gingerw have already given helpful suggestions.

May I ask if you have seen and/or considered seeing someone that specializes in the treatment of autoimmune disorders?

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I had that flat blotchy rash with my first round of mono! Diagnosed in Nov 2019. Then negative, then second round last September! Tested negative again a few months ago. I also had itchy blotchy rash that would come and go on my back. I still have fatigue and brain fog that comes and goes! The Doctors look at you like your mad! Look up Anthony Williams books ‘Cleanse to Heal!’ And follow him on Instagram if you’re on there. His protocol and supplements to kill off EBV is the ONLY thing, plus rest, that’s helped me! It sounds like Mono and EBV related to me!! My RA tests all came back normal. I hope that helps.

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