Hello everyone! I'm new here and in the process of being diagnosed. A little history:
I remember in middle school and highschool I periodically had trouble controlling my legs. One especially embarresing time in PE: We were set to do a relay outside. It was morning and a bit chilly and I told the PE instructor that I wouldn't be able to do it but I think she just thought I was trying to blow it off. I'm at the start line, she blows the whistle and everyone takes off but me. I was able to get my knee up to try to take off and I fell like a stick in that position. :-[ I scraped myself up pretty good. People laughed for days! I would get stiff going up stairs and fall. I never took it seriously though and never told my mom about it. This has continued intermittenly throughout my adult life. I also get it in my hands where they just lock up for a few seconds. And last winter I started getting toe cramps where they would get really stiff and painful.
In the past two years I've developed extremely dry eyes. At first I thought my vision was just changing because suddenly everything was soo blurry. But when I went to an optometrist my vision hadn't really changed at all. I went to several different optometrists trying to get a handle on the vision changing and most of them end up getting frustrated and almost angry at me because I can never see what they want me to see when they want me to see it. Last December I developed a corneal ulceration. I have had 2 ulcerations and numerous flare-ups of something since then. I've been out of work 5 times since the beginning of the year because when these flare ups happen I can't drive - even with sunglasses on a cloudy day it's too bright and at night I'm blinded by the headlights. My eyes water and tear up and close on their own. Looking a TV or a computer screen is impossible. My opthamologist has been baffled as to what's causing these. He finally referred me to a corneal specialist last month who determined I have occular rosacea. I am being referred to a dermatologist to get my skin rosacea under control (though didn't know I had rosacea - just thought I was always a bit rosier than others!) in order to control the occular rosacea. He decided to run an ANA and a SSA and SSB. The SSB came back positive while the SSA and ANA was negative. I saw my PCP last week and he initially didn't think I would need to be referred to a Rheumatologist because my main symptoms are dry mouth and obviously the eye issues, but then he called me a few days later and said he had a rheumatologist look over my labs and history and decided I should be under the care of one. He didn't feel that I would need a lip biopsy.
It appears that I'm geting closer to a sjogrens diagnosis which is relieving. At the same time - I'm only 34 and do not want to get started on a laundry list of medications that are just going to end up causing a whole bunch of other problems. Can anyone help me with what to expect from the Rheum. appt and how to go about this as naturally as possible?
Thanks so much - so glad to have found this forum!! ;D
Oops - just realized there is a "Welcome Members" area - please feel free to move mods. Sorry!
Hi perpetualbug,
Allow me to Welcome you to the forum! ;) I think you'll find it a friendly and welcoming place, full of information and lots of encouraging support.
I'm sorry to hear you've so many problems with your eyes. For many of us, that's one of our first symptoms, but everyone is different, too.
It's good that you will be seeing a rheumatologist. I'm not a medical professional, but most likely they may take a history, a physical exam, and some blood work. You can list your symptoms and should be able to ask questions.
You may want to write a short and to-the-point summary of your symptoms now and how they've presented. I can understand that you don't want to be prescribed a lot of medications. That might not be the case at all. In my personal opinion, I think most of us want to be on the least amount possible. Sometimes we need to take a couple things to keep the symptoms under control. Again, we are all individual in that and what we need.
You'll get some other advice, too, I'm sure. We are glad you found us. Please ask anything at all and keep us updated. ;)
Take care,
Melinda
Hi Perpetual!
I just read your post and am sorry you are having this "stuff", but at lease knowing is everything. It's very late and I wanted to say hi and you can find just about any information here on the board.
It's a good thing you are going to see a rheumatologist. Oh, about the lip biopsy....don't press for one if they do not require it. If your bloodwork is positive, that should be enough. If there was a question, they might ask for the lip biopsy. In that case, it might be worth it. But, just to have it, is not worth it. Welcome. Lucy
Welcome to the forum, perpetualbug!
Hi Bug, and welcome to Sjogrensworld! You will find good company here, along with the wisdom and compassion of our members.
You can probably expect a rheumatologist to want to see you every few months in order to monitor your labwork and symptoms. He or she may also suggest medications. I know you want to avoid them, but you may want to consider some of them as your symptoms progress. For example, many of us find Restasis to be a great help for severe eye dryness.
I can relate to your experiences with painful dryness, light sensitivity, stinging/watering, and night blindness. I'm sorry that you are dealing with it, too.
Best wishes,
Cheryl
Hi Perpetualbug,
Let me also welcome you to the SJS World and family! Like the others mentioned, there are scads of topics to be had by using the search engine located in the upper right hand side of this page (shucks, I spend a lot of time there as the rheumy is a quiet kind of doctor (don't learn a lot from him)).
I'm with you, the eyes were one of my first symptoms too, couldn't see well enough to even drive for some time (sure scared me!). My eyes got so dry to register a zero on the evaporation tests the opthamologist did; whew, it's no wonder they stick together from time to time.
Now depending on what type of a rheumy you get, he can wait until your symptoms get worse, start you off on Plaquenil (more of a maintenance type of med), to prescribing everything; it's so hard to know what your doctor will do. Shucks, it took the 1st rheumy several months to talk me into taking Plaquenil, and have now been taking it for more than six years now.
Again, welcome and I hope to chat with you soon.
Take care of yourself -
Patze