Help with sudden onset of new symptoms from possible flare

[TiredNerd]

All of my conditions are in my profile...

About a week ago I suddenly developed severe burning (felt like tearing) in my shoulders and elbows, swelling in my hands, a headache, upset stomach with distention, green bm (even though I haven't had any green vegtables/food), skin on my feet seems to be peeling off (in chunks and not just the top layer - it gets down to sensitive "new" layers), and finally significant eye issues. The muscle and joint swelling is nothing new - usually a sign of a flare-up. But the gastrointestinal and skin on the feet issues are new and it makes it difficult to move around. However, the eyes are where it gets even more strange.

My vision has slowly gotten worse of the past year (blurry both near and far) even though the eye doc says the eyeballs themselves are fine. But over the past week my eyes won't stay focused on objects and I have become very photophobic. This, of course, had been accompanied by a persistent headache. The only thing the eye doc could conclude is that I have somehow developed neurological damage to either the ocular nerves or to the occipital lobe. The rheumatologist won't rule out that I have a flare-up of encephalitis.

It should be noted that the latest labs showed elevated TP, SGOT, and very high CPK levels.

The neurologist and rheumatologist are not completely sure what is going on. Has anyone had similar symptoms appear? If so, did you ever find a cause? I'm hoping to be able to help my docs find a direction because things seem to be slowly getting worse.

Thanks in advance!

[lupus_01]

It sounds a bit like uveitis. You can only get treated for this at a and e eye clinic. But I think if your gp has seen you he would have recognised the symptoms

[oldtimer2]

I'm really sorry to hear your problems, I hope that you get an answer soon.

If both your rheumatologist and neurologist are not sure what's going on, it seems unlikely any of us will know... Often things only become clear with time unfortunately, and then it can seem obvious - the 'Why didn't I think of that' problem. It does sound a rather odd collection of symptoms and signs!

[TiredNerd in reply to oldtimer2]

I appreciate The response. I usually ask the public when the docs don’t know because I’ve had a number of times where other people have had similar odd situations for a while and their docs eventually found out something that mine hadn’t thought of 😉

Interestingly enough, my neurologist ordered 4 MRIs and 1 NeuroQuant MRI this morning after conferring with my other docs (and apparently a colleague at Mayo Clinic) so we will see.

[Angels54]

It’s so awful what we have to cope with , I have Sjorgen’s disease my eyes don’t fee the same , think it got worse when taking steroids, biological injection, keep pushing forward for advice 👍

[TiredNerd in reply to Angels54]

I appreciate the response. The steroid may have made things worse then because they chose to give me a “very high” injection to see if that would haunt the progression.