View Full Version : New here!
01-10-2009, 10:52 AM
Hello all, I'm Shelly, recently almost diagnosed with Lupus. Some of you may have seen me on the bydls boards, too. The reason I say almost diagnosed is this; My pain clinic doc says Lupus, my neuro says Lupus, my GP refuses to even talk about it. I have an appointment with a rheumy at the end of this month. I have some of the goodies that go with Lupus, Raynaud's, fibro, etc. My blood doesnt want to cooperate with the standard tests. Most things come up as just over normal, or on the high side of normal, or they just change completely. After doing some research on different illnesses, it seems my symptoms match SLE. I really like the message boards that help so much with my loneliness. I am basically housebound at this point. The computer is the way I socialize. My husband and I have a large home that we share with our son (3yrs), my mom, my sister and her sig other, and any friends that drop by for a day or a week. I also have a daughter (7yr) who lives with her dad. Everyone is very supportive and accepting of my limits. But I also look forward to communicating with people who really know what I feel. Sorry this got so long, looking forward to making new Loopy friends!
01-10-2009, 01:13 PM
and welcome to the forum :D
im so pleased you have got good support from your family and friends, you will deffently need it in getting your final diagnosis :!:
everyone here are great ppl and very friendly :)
hope you enjoy your time on here,
and good luck with the rhuemy 0X
ntw gp's can be like that sometimes grit your teeth and prove them wrong lol
01-10-2009, 01:18 PM
Welcome!!!!!! It sure does sound like you have a house full of wonderful people :!: It makes an amazing difference when you have support from your family and friends and it makes an even BIGGER difference when you have support from other people going through the same things as you :D You will love it here! Everyone is very loving and supportive and always has something nice to say. There will always be someone who can answer your questions or push you in the direction you need to go in order to get the answers you are looking for :lol: Again, welcome and keep posting, it will be fun getting to know you and you getting to know us:angel:
01-10-2009, 04:16 PM
Welcome from me as well. Similar to you, I was diagnosed with "something" in July. My rheumy says it's probably SLE but some tests, like you, come back normal to not back that up (kidney, liver function, vascular issues). But we all know there are so many different kinds. My primary doctor said it could be SLE but actually had to look up on the computer to what the symptoms were and what my positive ANA w/speckled pattern meant (how's that for making you feel good?). My rheumy says my occasional migraines come from the SLE, but the neurologist that my primary sent me to said no, and he wants to control those thinking it's because of "all the pain meds" the rheumy put me on. When I asked him what do I do when my joints ache so bad I can't walk?.... he says "bite the bullet". Don't think I'm not bringing THAT up at Mr. Rheumy this week. My eye dr. says no vasculitis lupus as my eyes look great. Either EVERYONE wants to claim your symptoms as their own for treatment or NO ONE wants to diagnose you with anything.
I think you'll find a lot of info here. I've been coming to this posting board for almost two weeks now and have learned so much. You have a great support system and that is fabulous. Good luck and check in often.
01-12-2009, 06:10 PM
Welcome to our family :lol: It does make a difference to be able to communicate with others who truly understand what you are going through and who can give you comfort, advice, and understanding.
You are very lucky to also have a supportive family. That makes a significant difference in your ability to manage your life with this disease.
You will find that everyone here is open and ready to help in any way that we can. No post is too long, so don't worry about that :)
Peace and Blessings