Lupus Support Group

i just wanted to welcome you. this is a wonderful group of people and so glad that you joined. you will find a lot of support on here that really and truley understand what you may be going through. i want to wish you well with your upcoming visit to your rhemy keep us posted.

Welcome to the group! I totally understand the frustratation of seeing many doctors. I was happy, finally to be refered to a Rheumy! However, it took over a year of tests ect. to finally be diagnosed with Lupus.... Hang in there, ask lots of questions and be patient above
all!
Take Care
xox
Sylvie

Thanks .... you both hit the nail on the head .. 'understand' ... my friends and family don't understand ... in fact because so many doctors have been unable to come up with a diagnosis, I know my closest friends and family think I am making it all up in my head.

Oh, if they only knew what we are going through. This is a very difficult disease.

Thanks again .. being around people who understand is very much appreciated.

Welcome. I did the same thing, read for a couple of months before I participated. It is a difficult disease to diagnose. I was dx with RA 28 years ago (early 30's). My first concerning symptoms were muscle weakness and balance problems, cognitive deficits. My life changed. The pain is overwhelming sometimes isn't it. I was dx 4 years ago. It was ironic that my RA factor 28 years ago was 10.7 and 4 years ago it was the same but the joint pain was so much worse. They also did an ANA which was + for Lupus. Rhumie did multiple more tests. I feel, after 4 years, that I finally have a good treatment team. Best wishes to you with your new Rheumie. It does help to know what's going on. I felt the same thing. New I was having serious problems but didn't know what it was. I thought I had MS before I was diagnosed. In some ways Lupus mimics MS with multiple other problems that affect everyone differently. As you know, Lupus is an autoimune disease. I had a massage therapist tell me today that I should take something to improve my immune system. Everyone tries to help even when they obviously don't understand the disease. I told her to stick with my massage. Massage/facial/pedi's important part of me taking care of me. Again, welcome and HUGS.

Just want to welcome to to the group.

Hugs Nancy

Hi and welcome to our caring group. You will find that any time you need to vent or have questions you will ALWAYS have us to come to. We all understand and support eachother thru tough times. This place is a life line to me and Im sure for others here. Alot of us have people in our lives who just dont "get it". Never will unless they walk in our shoes. It can be frustrating at times and lonely. Now you have us though :)

Not all rheumies are good ones though and if the one you go to gives you the run around, find another one. Some of us have gone to more then one rheumy before we find the right one that helps us. You may not even have actual lupus but a mixed connective tissue disease which mimics lupus and treatment can be similar. When you go to the rheumy, take a list of all your symptoms and take notes if you have a poor memory. Also, get copies of all your blood work when they come back. We can always try to help you figure it out if the dr. doesnt explain it well. One bit of advice. Also, please request the Beta 2 glycoprotein test. It is for an auto-immune disease called anti-phospholipid disease which can have almost the identical symptoms as lupus but also causes clotting issues. I have this disease also and thank g-d that my rheumy tested me for it. Its not a common test which is why Im telling you to request it.

You will learn that you need to stay out of certain situations to feel well. Stress is a huge trigger and toxic for auto immune disease's and so is over doing it. Theres lots to learn but we can give you the important ones quicker then reading it all on the internet. Also, bit of advice....If you have an auto-immune disease, like Marla explained, you do not want to take any type of supplements that boost the immune system. They can be toxic to us.

You have found friends here. If you want any more info on APS feel free to email me.
hugs
Melissa

Hi & welcome to the group! best of luck with your upcoming appointment! will keep my fingers crossed for you!

welcome!

welcome to you, even though its not a welcome problem, these people on here have given me more info than any Dr. has, you will find that you will come here for alot of answers. Good luck to you

hello and welcome.. hugs ..marie