Newly diagnosed bechets

[BabyOleg]

Hi all,

Iv been back and forth between rheumatologist, eye consultants, dermatologist and the rest for over a year and a half now. Firstly they thought it was lupus, then porphyria, then a few others chucked in the mix - now I’m finally down to bechets with a small possibility of periodic syndrome. Also, severe autoimmune dry eye.

I suffer with skin rashes, joint pain, swelling in my hands, TERRIBLE inflammation in my eyes, (my worst symtom) fatigue, raynards, ulcers in mouth and Iv had one down below which is a new thing for me. My optic nerve has been inflamed twice causing a fixed dilated pupil for days on end. And I do wonder if the random seizure I had a couple of years ago may well have been related to this all.. who knows.

Been started on colchicine, and prescribed ikervis for eyes and dexamethasone drops. Which have been a saviour as my last flare in my eyes lasted 4 months untill this medication was started. 2 days ago was the first time I saw the whites of my eyes in months and I can’t tell you how happy I felt.

I’m 31 and live in uk.

I just wanted to say hi really, and wondered if anyone else suffered with there eyes like I do? It really gets me down. So far I have stayed positive and tried my best not to let this take over my life.

It feels good to know what it is now rather than being ummed and arred constantly.

Iv seen more doctors and consultants and days spent at hospital appointment this year than I have in the whole of my life.

Multiple blood tests, scans, a and e admissions, and I’m now almost completely done with it. Time to get better! (Well symptom wise anyway)

Hope your all keeping well.

Sending lots of love everyone’s way!

[TurtleWings]

It’s so frustrating. I know exactly how you feel. I am in a new town now explaining to all new doctors 15+ years of some of the craziest symptoms and problems they’ve ever heard and I see fear in the eyes as the results of secondary problems come in now on things like my blood pressure being extremely different in one arm than the other yesterday which causes the first doctor to have me make another appointment to see the BIG doctor. Lol. Just had three specialty appointments last few weeks that all did this. This is how nothing gets done. I have to get to a big hospital somewhere. I feel I’m reinventing not just the wheel but the whole car.

[TurtleWings in reply to TurtleWings]

Oh and I really do understand the eye problems too. I’ve been diagnosed with uveitis, diplopia, glaucoma, cataracts, convergence insufficiency and more. Not really sure if diagnosis are correct truthfully. Some yes but glaucoma for example seems to come and go for me depending on eye doctor. Don’t think it’s supposed to do that. But pressurization in eye could be due to other things. Can they tell the difference I wonder? Hang in there sounds like your self advocating this like you should. Good luck.?

[BabyOleg in reply to TurtleWings]

My biggest hate is when you see a new person and they ask “so tell me, what’s been going on” —- hmm ok let me get the manual out where do you want me to start? - I hate having to reel everything off over and over again. Yeh I know what you mean by one doctor says one thing and then another says different... you would think that they would all see the same thing if it was really there

[TurtleWings]

I've finally got an appointment with at least a rheumatologist at a big hospital. Also have started getting information together for possible for the NIH rare disease studies which could lead to my diagnosis. I will have to see how capable I am of getting all this information etc uploaded and sent. I'm not as mentally sharp as I used to be. Haven't been on a computer for years because they caused seizures and migraines. Wish me luck.All the doctors I've seen for the last 4 months or longer want me to see their Big guy. Lol

[BabyOleg in reply to TurtleWings]

I wish you all the luck in the world please let me know how you get on xx you got this!!

[TurtleWings]

Thank you for your attention and a compassionate voice with some positive reinforcement is very motivating. I appreciate it.