Hello everyone, my name is Tina and I'm a 28 year old mother of a vibrant 3 year old little girl. I've been having many, if not most, of the symptoms of SJS for as long as I can remember, as far back as 7 or 8 years old. I've gone through thyroid and reumatoid arthritis testing along with many other hormone tests and such and up until recently I was told it was "all in my head". I saw an episode of mystery diagnosis on the health channel one day a couple months ago and realised that I'm not the only one, someone out there was just like me, I've been reading posts on this forum all night and found myself crying because I realise I'm not crazy and I'm not alone in this. Just this week, after all the research I've done, I finally brought it up to my GP and he is sending me to a reumatologist for testing for SJS, I just want to let you know how much this forum means to me in the short time I've known of it, and how glad I am that there other people who have gone through the same trouble as I have had all my life. You have given one woman the hope back that I might be able to get this under control and lead a semi-normal life. Thank you all so very, very much.
Tina, so glad you found us, but sorry you had the need to come searching. The things that help most are having others affirm our feelings and sharing our symptoms, feeling supported on here to enable us to understand that others can't 'get' how we feel and getting the treatment we need from Drs.
One thing to remember is that you may find your blood test negative but still have the symptoms of Sjogrens. Many rheumatologists will treat the symptoms without the need to see a particular blood test positive. Hope you find someone who is understanding. Keep posting and let us know how you get on XX Ailsa
Hi Tina :)
Welcome to Sjogrens's world. Too many people in here have been through the "it's all in your head" scenario. You're not alone.
I hope you get the answers you need soon - and irrespective of answers - I hope you get your symptons treated.
Take care - Scottie :)
Hi Tina, You are indeed not only. Since a year or two it often feels like I have the flu. I have jaw/earaches, muscles aches and fatigue. Now six months and a lot of doctors later I don't have a diagnosis. The symptoms looks like Sj?gren but my bloodwork and lip biopsy were negative. Now I'm waiting for an appointment in a hospital where they do research for chronic fatigue syndrome. I hope they can do something for me.
Hi Tina
Welcome! I'm so, so glad that you've found us and that we're already able to make a difference to your life. It's good to hear that your GP is taking you seriously and sending you to a rheumatologist. It takes some people years to get a definite diagnosis and treatment, so be prepared for a long journey! As Ailsa says, around 40% of people with SjS have negative blood results so don't be disheartened if that happens to you. Whatever label is attached to your symptoms isn't as important as getting some treatment.
Visit lots and let us know how you are getting on. There's lots of help and advice here about meds, as well as things to make your daily life easier. We also have a lot of fun in the chat rooms and on the message boards, discussing all sorts of things apart from health issues.
Take care - Chickpea
Thanks to all of you for your replies, and I will be here often and will keep updating things along with joining in on convos, I appreciate the humor along with the serious topics too lol. Thanks again, Tina.
Hi Tina
Let me welcome you too. A vibrant three year old must take a lot of your energy!
I know what you mean about being told/led to believe, it's all in your head. This happened to me for years before my eventual diagnosis. Almost three years on, and I still find it hard to acknowledge new symptoms, as a voice tells me, it's my imagination. However, I now know that, if I think there is something wrong, there usually is, so am trying to trust my own intuition. You need to too.
Looking forward to getting to know you.
Kathyx
Hi Tina and Welcome to Sjogrens World!
I'm glad that you found us although sorry for the reason that you even had to even look! I'm also glad that you felt that you connected to people as you were reading through the post and went to your GP and he is referring you to a rheumy for further testing. I hope you get the answers and treatment you need to help with your symptoms.
Keep us posted and welcome to the family!
With my SJS I got told everything to: probably something I picked up from my cat (didn't have a cat when the stuff started) to "we are sure it is some type of cancer but you are not showing the right symptoms and are not sick enough". :o I don't have any close family either - so I am basically solo except for some little souls in cat suits. LOL I also had tons of tests, CTs, MRIs, and given lots of blood (one time 15 tubes- whew).
My gp started sending me to specialists cause my blood work was really off and I got 5-7 sinus/throat infections every year. I'd go to one, tests would get run, maybe I'd get an antibiotc for awhile, I'd see em for a few months and then be told I didn't have to come back. I'd think I was "cured" then see my gp for a physical who would tell me my numbers were still off and send me to another "specialist". This went on for 6 years and I felt I was on an emotional rollercoaster. I finally got sick and tired of worrying about it and decided I was not going to let it run my life and I'd just take things day by day. That attitude has sure helped.
Looking back, I think all us Soggies now see things in a different light. Five years ago I got allergic to contacts and I never associated it w/SJS. I also had other odd things that now I look back and say Aha! I had just been living with some stuff so long that it just didn't seem abnormal to me. I have Hashimotos (thyroid), Reynaurds (in 2 fingers), SJS, and take an anxiety medicine that really helps me. Not sure if you are on an anxiety med but it does help take the edge off stuff.
Welcome to the group!
;D appointment with the rheumatologist made for the 28th, scary when you're looking forward to going to a doctors office. :D
Hi Tina!
I know just what you mean about that mixture of emotions: you know you need to have the referral to the rheumy, you're pleased your doctor took you seriously but ... you really wish it wasn't happening. And you can't believe you're actually looking forward to seeing the specialist!
Let us know how things go and what the rheumy says. And if you get the 'wobbles' in the days before your appointment just let us know - we all care and want to know how you are.
Thinking of you - Chickpea