Just wanted to say hello! I have been looking at posts for awhile and decided it was time to post. I do not have a diagnosis yet but feel that it is sjogrens. I have been to multiple dr's in the past 2 years. It all started with a bad disc in my neck, had surgery and was doing better and then right at 6 mths started having a whole new slew of symptoms and have been on the journey ever since. My primary doc thinks Im crazy, the one Rheumie that I saw said that she wouldnt treat an autoimmune disease until there was organ involvement, (wasted my time and money there). I saw a neurologist a few wks ago who says I have neuropathy from the problems in my neck. My current insurance is an HMO so I am limited in the dr's I can go to but I have changed my insurance but doesnt go into effect until January, so I will have to wait to see the Rheumie that I really want to see. All my labs have came back neg but my ANA was slightly positive at 1:160, tested twice with same result. But I have all these wonderful symptoms that so many of you have. My eyes have really been bothering me and I do wear contacts but it was becoming difficult to do so. Saw my eye doc last week, have inflammation of the cornea, vernal conjuntivitis, GPC, infected oil glands....so no more contacts and prescribed Restasis and lotemax. I asked him to do the shimmer(sp) test but he wouldnt do said that all that does is test for tear production and he already knew that I didnt have very much of that. So, with that and my tongue feeling like a brunt peice of toast, burning and tingling in my feet and legs, pain everywhere, fatigue and now having some issue's with, whats the word you guys use, my vajayjay or something like that, lol. I am trying a differernt primary next week who is suppose to be a very caring physician, hopefully she will put the pieces of the puzzle together. This is a great website, and now you know my story and I plan on being around for awhile.
Hi Kelly!
Welcome! I am glad you found us. I was diagnosed in Febuary this year and have found this site to be my lifeline. Everyone here is so helpful and smart and I have learned so much.
So ask all the questions you can think of, there is always someone who can help!
Hi Kelly :)
I am Kelly, too. I go by KellyG since there are other Kelly's here as well. If you didn't know, Kelly means "fighter" or "warrior maiden" from the Gaelic roots. I'm not Irish, but with my reddish blond hair and green eyes I may as well be.
WELCOME! We are glad to have you, though we are not happy you have had to come and find us. I also have a tongue that feels like burnt toast. Love that description. Do the insides of your cheeks get all raw and sore, too?
Good luck and keep posting.
KellyG
Hi Kelly,
Let me also welcome you to the SJS World and family! Please look around as there are tons of topics and scads of information available by using the search engine in the upper right hand side of this page. If you don't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.
Whether you have SJS or not I can't say, but I sure understand the confusion that you must be going through. I am sero negative and that drives the doctors crazy as they can't quiet figure all that is going on with me. I am a sero negative for Hashimoto's as well, but was diagnosed by a FN "biopsy" so I do test positive, just not in the usual way. Yeah, the human body can do some very interesting things.
I'm glad that you'll be able to see new doctors soon, it's so hard being part of an HMO sometimes as you can kind of get locked into a system that might not be very flexible to your needs.
Again, welcome!
Patze
Hi Kelly,
Welcome! We now have more Kelly's in the Forum....yippee!! I was interested in your story and your descriptions of a burnt toast tongue and problems with a vajayjay!! I think Oprah and Gail used that term quite often on TV :D I'm sorry but the vajayjay and the toasted tongue along with the lack of tears sounds like SJS. You say your ANA was slightly high.....I had an original ANA of 1:80 and a second ANA of 1:160 which I was told was high. I think 1:40 or less is normal. I was worried thinking my ANA had increased meaning my disease was getting worse. But, I know people can run high ANA's just with Osteoarthritis so I'm not sure how they grade these and if they can change from one test to the other or if they're an indication of disease getting better or worse.
Anyway, I hope your symptoms improve and that you get some great care when you have your new rheumy. Why would one quit treating you once organ involvement set in? hmmm.....don't know about some of these docs and their responses but hope to hear more about your journey and glad you're with us ;D
jill
Thanks for the great welcome! Yes, I had heard before that kelly meant "great warrior" which is a good thing, or I might have given up before now. Gold 55, actually what the Rheumi said was that she would not treat an auto immune disease until there was organ involvement, which is crazy, becasue the whole point is to catch these things before they do affect our heart, lungs and whatever else. She and I did not see eye to eye and I told her so. Soooo, wont be going back there, lol. The ANA thing is that most Rheumi's dont get excited about that number until it hits the roof, like 1:1280 or something like that. Another thing that I have been noticing (is that a word) is I frequently have black floaters in both of my eyes. I had notice one back a few months ago that came and went in the evening but now their are more and increasing in frequency. I was thinking that maybe it was because of the inflammation that I have going on now and of course the dryness. Do you guys have these?
Kelly, do you mind me asking how old you are? I'm in Ophthalmology and see more cases of floaters in people 50 and older unless someone is having a retinal detachment. You would then have tons of floaters and a curtain coming down over the eye (the feeling of). A floater or two here and there isn't a bad thing especially if you are of a certain age when the vitreous begins to shrink and detach from the back of the eye. Sometimes we'll get one that seems to stay in the line of vision.....if it doesn't move or dissipate then I would see your eye doctor. Are the floaters more noticeable when you look up into the sky or at a white background or are they very noticeable all the time?
I dont mind telling my age, I am 42. I did tell my eye dr that I was seeing a floater in my left eye and he did examine my eyes and that was just last week. They do move, I just have noticed them alot more the last f2 days but then again I just started wearing my glasses all of the time and the ony time I saw them before was in the evening when I got home I would take out my contacts and put on my glasses. I see him again in 2 wks and I will be sure and tell him that they are increasing and I know if it gets worse I will call. I apprecitate your concern. Its good to know that I have a back up plan now and it is all of you!
Welcome Kelly.
Hi Kelly and welcome! I think your ANA and symptoms should warrant more testing - that's not a weak positive and in the presence of symptoms, it absolutely sounds like something autoimmune is going on. I did have the sky high ANA that doctors get all worked up about (greater than 1:1280) but I don't really know what the significance of the titer is...I thought I read somewhere that it's not indicative of disease activity, so I think your positive test should be investigated further.
I also think it's ridiculous that the rheumy you saw won't treat AI diseases until there's organ involvement. I'm pretty sure I read somewhere that Plaquenil can help to prevent kidney damage in Lupus patients...?? (I don't know, I probably read too much and just get myself confused ;) )
Regardless, Plaquenil can help with the joint pain associated with SjS (hasn't helped with my fatigue, unfortunately, but the joint pain is better).
My mother has floaters...and my brain fog is getting the better of me because I can't remember her diagnosis. I just remember that she needs eye surgery...cataracts maybe? I think my brain needs a nap. :)
Welcome, Kelly
And sad that your Sjögren's Syndrome picture is so clear. Losing the use of contacts can make a significant difference in your life.
Thank you for mentioning your age. My niece is also named Kelly. Your post reminded me that I have to get on Facebook and let all my relatives know about Sjögren's Syndrome, including my niece Kelly. The symptoms are so puzzling, and sometimes just purely annoying without seeming to threaten life or the pursuit of happiness, that it would be helpful to them (you?) to know that a relative has it.
There's a lot of support, resources, and help here.
Welcome,
Soycoffee
Hi Kelly :)
A belated welcome to Sjogren's world!
Take care - Scottie :)
Quote from: Scottietottie on October 31, 2011, 05:17:10 PM
Hi Kelly :)
A belated welcome to Sjogren's world!
Take care - Scottie :)
Me too Kelly!! I've been belating for days. You've come to a great place for support. Welcome!
Welcome Kelly
susanep :)