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At a loss, multiple consultations still no answer...any idea?

Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)
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@change25

It really is life changing, it's awful how you can't do what you want to do. I'm similar in that the heat and or the sun exacerbates my symptoms. So these days I won't venture out until dusk.

Or perhaps the UV causes autoimmune diseases to those who are susceptible? When looking back at old photos from 12-16 I'd only go out for a few hours to play football where no rash was present. From 16 to 22 I'd play golf most days, this is when the rash started. It could just be a coincidence with time and age but it does make me wonder.

I'm sure we'll get it sorted, hopefully those that see us will have the knowledge we require.

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Replies to "It really is life changing, it's awful how you can't do what you want to do...."
athenalee | @athenalee | Jun 9, 2021

I think that working with a rheumatologist is key, although I’m indebted to the neurologist for suggesting Sjogren’s. Now, I’m hoping I am on the right track. And, hopefully this path will bring you answers as well!

The rheumatologist said I was definitely given “bad genes.” What I’ve read is that a lot of what influences what diseases we get are our genes.

These then have “triggers” which may set the “bad genes” into action. In my case, both PBC and Sjogren’s can be triggered by infections, including things like giardiasis. Unfortunately, I contracted this three times and had the first episode, 15 years ago, for nearly a year as my physician didn’t correctly diagnosis it.

I think there does seem to be a correlation with things that make our symptoms worse, like the sun and eating high levels of carbohydrates. It’s definitely a challenge to figure out what affects us individually and what works to treat us and our symptoms. Right now I’m sticking with eating well and walking 2 or so miles a day. And of course researching and waiting for my next doctors appointment!

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