Lupus Support Group

Hey gidget,

I am so sorry you are going thru this. It does suck, I have been thru it. I had a bad gp for years that I believe could have helped me, and diagnosed me sooner. I am finding though that gp's don't know a lot about Lupus....well and for that matter I am not sure my rheumy know's a whole hell of a lot either.

I hope you are able to get into the mayo, I have heard they are wonderful. Are you from Minnesota? or do you live there?

hope you get to feeling better.

hugs,
paige

Another slap in the face. My insurance wont cover the mayo clinic...GRRRR!!

I'm sorry; I was afraid that was going to happen. My GP did the same thing so I called the rheumy back and said that I could not live like this. He gave me Relafen, well Salsalate first and it didn't sit well on my stomach. Trick is the relafen takes 2 weeks to work fully, but I did find a little relief in the first few days; it just kept getting better and better. Nothing takes away all the pain, but after 2 weeks I felt human enough again to participate in activities. I wish you the very best of luck and I"m so sorry that you are suffering so.

Gidge,,,,,I know this is frustrating....So many of us have been there. Call your rheumy and ask if it is too late to add the beta 2 glycoprotein test to your blood work. I dont know why I feel so strong about you having this test done, but I do.....my intuition is usually right. You have MANY of the APS symptoms I had/have AND you had LYME disease. Your regular gp is just a lazy doctor because she can get the code from the lab (or even just WRITE down the test name) and the results are BLACK AND WHITE. They give you the normal value and then your blood results which are either normal or elevated. Period. Demand this blood test to be done...If you need to, print out info on lyme disease triggering APS. It is THERE. and then give it to the rheumy. If you need to go back to a lab (and he can call your blood test in to any local lab) do it. There is a man I met on another list who was sick like me with all the APS symptoms and had actually clotted. The dr.s kept telling him his tests were normal UNTIL i told him to have the beta 2 test done which came back positive. He is now on plaquenil and is so much better....If you want, I'll call your rheumy and pretend Im you requesting the blood test :) LOL. Just want to help you, honey.

Melissa I will call her on Monday they are closed till then. I'm going Monday anyways to do the blood test. I'm sure she will do it.. Thank you Hun for caring so much.. =)

Hello Gidget,
I cant believe your Rheumy has not given you anything for the pain. That is insane! You should give him/her a call and ask if you could go back for a shoot or something---My first visit to my new Rheumy-I was in so much pain---Yes the first thing they do is order blood work-but he had me get the bloodwork first and then he gave me a cortisone shoot in my arm for the pain all over my body---I tell you thank God for that--It helped me after about the 2nd day--then I was able to function somewhat better---Thats too bad you have to keep struggling with the pain---Sometimes you need to be a little demanding with these docs! I will say a prayer for you--I hope you get some relief soon. God knows Ive been there before and it is horrible--Hang in there... =)

Gidget;
I go to the Mayo and it's the best thing I ever did. I'm sure there are other places, good, too, but they have been amazing. I went for almost 2 weeks for testing and evaluations. It depends on what you're there for I guess. I was there for a possible liver and kidney transplant. Actually, if it weren't for them, I wouldn't have known I had Lupus. I think I have had it for years w/o being diagnosed. They did a kidney biopsy and found I had stage 3. Before that,(a few months) I had a liver biopsy here in my home town, Naples, and they found I had Chirrosis of the liver stage 4. (I don't drink) Now,the Mayo may thinks they could be related. I go to the one in Jacksonville Fl. I live 6 hours away. They even brought my case to Rodchester to check out. There IS someone out thre to help. Please hang in there!!!

Nancy