Hi everyone,
After nearly 20 years of symptoms, diagnosed with MS, getting undiagnosed and now diagnosed with fibro and most likely Sjogrens it was time to join your forum. I have been reading the posts for a while now and am ready to join in. My story is quite long but probably not so different than many who did not have a text book case the first time they went to the .
I have had sjogrens symptoms for years but the neuro I was seeing made a snap diagnosis of MS which more than likely delayed a correct diagnosis. I started a flare last summer which led me to see a Rheumatologist who i really like. I have a low positive ANA, blood and protein in my urine, a ton of neurological issue and dry everything. I also have low vitamin D.
I have 3 kids, 19,24 and 27.
I am currently taking flexerill, vitamin D3, lotamax eye drops, restasis and genteel
I am looking forward to being an active forum member and contributer.
Barbara
As I said in another post, welcome.
Hi Barbara and welcome!
I have been on board about 5 years now and this place is wonderful. Even when docs can't answer questions, many times enough of us chime in and you can see a pattern of something. Good luck. Lucy
Hello and welcome BarbaraE!
The years from first symptoms (often identified by looking back) to accurate diagnosis (if any diagnosis actually occurs) is described on this Sjogren's site:
http://www.sjogrens.org/home/about-sjogrens-syndrome/sjoegrens-faqs
"The average time from onset of symptoms to diagnosis is 6.5 years.
But many have years and years before they even start to seek a diagnosis.
This is a complex and varied condition, with each person experiencing things differently, symptoms, syndromes, and responses to medications.
It is difficult to find medical professionals who understand and can deal with Auto Immune diseases.
The general population has no clue, and the term 'auto immune' sounds too much like immune deficiency, which is part of AIDS.
Here you can ask your questions, share your frustrations and joys and know you will be accepted and understood.
For me that is essential.
Welcome again.
Keep us posted
Hugs
Elaine
Hi BarbaraE,
Let me also welcome you to the SJS World and family! Please do come on in from the cold and warm yourself up by the fires of our collective souls. :)
I'm sorry that it took a while for the doctors to start to think it might be SJS, but I'm glad that you've found us.
There are probably a ton of questions that you have and you can find scads of answers by using the search engine located in the upper right hand side of this page. Just type in a couple of key words and the related topics will pop up. Now if you can't find what you're looking for, don't be shy and post aways as there is usually someone about that might be able to help.
Again, welcome, and I hope that you find this board as interesting and welcoming as I have all these years later.
Take care of yourself -
Patze
Hi Barbara
Glad to see that you decided to join us, welcome to our world.
Cheryl
Thanks so much for the warm welcome everyone!
Patze, you are right about having lots of questions and thank you for the search tips :)!
Carolina, you are right about the general population not understanding autoimmune issues and diseases. My neuro issues seemed to be the most prevelant symptoms for so many years that the drs ignored the other more subtle symptoms. I had several years of an abnormal amount of tooth decay but no one ever connected all the dots. It wasn't until the last five years or so that the eyes and other areas became such problem. I now have very dry eyes, nose, mild joint swellings that come and go along with the fatigue and neuro issues that I have been dealing with for years . My new Rheumy is the first dr to ask me about my hands and feet and the fact that they were ice cold and changing colors. With symptoms and issues showing up at all different times and coming and going at will it was difficult to get in when symptoms were visible and for the dr to get enough of a picture to come to some sort of diagnosis. Then a trigger happy neuro gave me a diagnosis of MS on my first appointment which turned out to be a mistake and ultimately delayed a correct diagnosis and the proper treatment. The Rheumy I am seeing now looked at all of my labs, gave me a very thorough exam ordered more bloodwork and X-rays of hands, spine and feet and gave me an information packet on sjogrens. She said she wanted to do some additional tests before deciding on treatment and recommended a urologist to follow up on the abnormal urine labs. I feel I am finally in good hands but it has been a long and bumpy road for sure. I am am lucky though as I only had one really bad flare which was more like a stroke which started a five day round of iv steroids. Thanks for the link I am headed there next.
Thanks Cheryl, Lucy and Joe for the welcome and I am sure I will have many more questions in the future!
Hi BarbaraE and Welcome! ;)
We're glad to have you join in. Please post away and ask anything at all. This is a welcoming and informative place of caring and support. We discuss most everything you can think of.
It sounds as if you've found a great Rheumy who will look at all your symptoms and "connect the dots." Finally...right? Now it sounds like you're on the right track and that must be a good feeling.
By the way, I have 3 children, too, around the same ages. Ours are 23, 31, and 35; two sons and a daughter.
We're looking forward to hearing more from you and being an active member, too.
Again, welcome!
Melinda
Hi BarbaraE
Welcome,Welcome,Welcome!
Glad you decided to join.
Ask about anything that comes to your mind. Feel free to express yourself.
Just like you need our support, we need yours also. We are here to help one another.
Duchess
Hi Barbara :)
Welcome to Sjogren's world. I hope you find the site useful.
Take care - Scottie :)
Welcome Barbara! I can't tell you how helpful I find this site.
Just want to say thank again for all the wonderful replys! Such a nice group of folks!