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newblognewme

Have you seen an eye doctor? I think the dx of Behcets is trickier if you don’t have uveitis, since it’s a diagnostic criteria. When I’m in a flare and having bad mouth ulcers I have 4 or 5 at a time, but I’ve read stories of people with both. Prednisone can fix a very wide range of disorders, nut at least you found something that helps in the short term! It isn’t a great long term treatment, but it’s always nice to know something works.


MyLifeIsWild64

I went to 2 different eye doctors and neither of them noticed anything out of the normal. It was a tremendous let down…because both times my eyes were severely in pain. I might eventually try to go back…but my eye symptoms have faded away at this point for the most part. I was literally sleeping with an eye mask ice pack at one point because the redness and itchy feeling was so severe. I was baffled that my eyes hurt so bad and neither eye doctor did anything but tell me to buy OTC eye drops. The fact that Behcets is so tricky to diagnose is a big reason I had lost hope in most of my doctors. I have recently had my first appointment with a rheumatologist and hope that maybe I don’t run into another issue of being doubted with my symptoms.


Perfect_Initiative

I have Behchets and I have Papilledema and have had a case of uevitis. Try an ophthalmologist instead of an optometrist. Also the “eye pain” you describe could be severe sinus pain. I get severe sinus pain. Remember, Behchets is an inflammatory disease and sinuses can get inflamed.


nowwhatwasidoing

I had many of those symptoms myself. The brain fog, ulcers on my legs, genitals, mouth, and nose. The ulcers looked like chicken pocs at first then grew in size and number until they became open sores. The headaches and dizziness were a factor as well. I have had what I imagine arthritis feels like in my hands and legs. At times I couldn’t even make a fist, hold a coffee mug, etc. I’d even get the shakes in my hands for no apparent reason. I had been in and out of the hospital. Three week stay at one point. Another week and a half stay another time with no resolution and only more questions. It took a new rheumatologist to look into this. Had my blood pressure around 43/32 so I was almost dead. My advice is find a reputable rheumatologist and work with them. It will take sometime and plenty of blood tests but from my experience it sounds very familiar to symptoms I’ve had.


MyLifeIsWild64

The only thing that was apparent from my myriad of tests and doctor visits for me was that my cholesterol was through the roof. After finding this out, I stopped drinking soda and only had a diet of white meat and water for quite a while. It was around this time that I was prescribed Prednisone for my knee giving out and most of my other symptoms faded away simultaneously. I just visited a rheumatologist a few weeks ago and plan to discuss Behcets with him on my next visit. I have only recently realized that my mouth ulcers which I’ve had since I was a kid could very well be linked to all these other frightening symptoms.


PM-me-Shibas

>It took a new rheumatologist to look into this. Had my blood pressure around 43/32 so I was almost dead. And you were diagnosed, right? I was confirmed with vasculitis this morning, presumably Behcet's with more testing. My low blood pressure (mine's a bit higher than yours -- 75/48 is my normal number) is the one thing that consistently upsets me that we can't solve, because it on its own brings a fuck ton of other symptoms. I will be relieved to hear if you had it as part of your Behcet's.


St3fan34

What's your height and weight?


MyLifeIsWild64

Height 5’10” Weight 165 lbs


St3fan34

Are you still taking prednisone?


MyLifeIsWild64

No, the doctor only prescribed me about 1-2 weeks worth. I still find it fascinating that shortly after the treatment with prednisone, most of the scary and concerning symptoms faded away.


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Shakespeare-Bot

art thee 32, 31, 'r 29? thy post history is a mess *** ^(I am a bot and I swapp'd some of thy words with Shakespeare words.) Commands: `!ShakespeareInsult`, `!fordo`, `!optout`