View Full Version : Just diagnosised with lots of questions...
07-01-2009, 03:05 PM
Two weeks ago my girlfreind who is 28 began having joint pain in all her joints but most affected were her hands and feet. They became very stiff and painful to move within a couple days. She also had swollen glands in her neck. We went to the doc to get her checked out and they prescribed her prednisone and took blood/urine. The prednisone worked immediately and the doctor sent the blood to the lab for some type of lupus specific tests. I am not sure what all was done, but I know the ANA test was very high and there may have been some other lupus blood tests that helps diagnose, but I am not sure exactly what was done.
All I know is that after the blood test the doctor diagnosed my girlfreind as having lupus and referred her to what you all call a "rhuemy" After doing some searching I've found that to be diagnosed you must have 4 of the symptoms from the list of traditional symptoms. She doesn't have a rash, no fatigue, no sensitivity to sunlight... only joint pain and swollen glands. I'm wondering how accurate a diagnosis can be made with blood work and these symptoms.. ??
A couple days ago she finished the prescription of prednisone and the joint pain has started to come back slowly, and the earliest appointment she could get with a rhuemy is A MONTH away... Seems like something ought to be happening faster than this! Is it just me wanting answers too quickly? I have so many questions and the answers I find only lead to more questions. I'm a man.. and I need to be able to fix things, and I just keep going in circles trying to figure out whats going on here..
Also, can delaying treatment/diagnosis by a rhuemy cause permanent joint damage? A month seems like an eternity before we can get on a treatment plan.
Any responses with advice, similar experiences, or info would be greatly appreciated!
07-01-2009, 10:57 PM
I think it is amazing that you are taking charge and being very active in this whole process. Your support and love will make an enormous difference in how your girlfriend handles this bump in the road of life. You said your girlfriend has joint pain, swollen glands, positive blood work and I am sure through all of this she isn't sleeping well maybe not even eating well. These symptoms all point to Lupus or at least an autoimmune issue.One thing that you and the doctors can not argue with is the blood work. If she tested positive with the Lupus tests done, than she has it. As for all the symptoms associated with the disease, well, it is different for everyone. A lot of people on here have the typical butterfly rash; however, I do not. Also symptoms may come and go and different ones may appear and then go away through out the life of the disease. If her doctor can keep her comfy with more prednisone until her appointment, that may be the way to go.Also, it is a great idea to call the rheumy every morning to see of there were any cancellations and even call in the afternoon. Someone will eventually cancel and she may be able to get in sooner. I think she is safe to wait for a month, that is as long as she can be kept comfortable. Call the doctor who referred you to the rheumy and let them know she can not get in for a month and see what he can do to help with her pain and he may even be able to call and push them to see her sooner. It is all worth a try and do not give up! You at least know what you are dealing with and soon she will be on a treatment plan and her comfort level will rise and you will see joy in her eyes again!!!!! Thank you for showing us that there are special people out there who love those of us with chronic illness just as we are :angelic:
Its great for her to have you on her side. get appt. with rheumy docs is hard they are always busy and booked. i have waited two months to see mine. you don't have to have every symptom for lupus most the time when in a flare is when you have the symptoms more so. if the blood works says lupus it is never wrong most the time people go months and years waiting for the blood work to come up right. lupus is a sneaky dis. and in your blood you can have a postive ana and than a negative ana.
so at least she won't have to play the waiting game of finding out what she has.
sorry she has this.
but do call her md for rx's for inflamation and pain until she can get into the rheumy, and have them put you on a cancelation list i do and i have gotten in sooner for doing that.
have her keep a journal of everything no matter how small it is. tingling, hair loss, swelling, sleep patterns, swollen glands etc. it will help with the dr's appt.
she is very lucky for you to be on her side she will need all the support she can get from now on. good luck and keep us posted.
07-03-2009, 07:38 PM
Gina is right, she should really start a journal. This will help her keep track of her symptoms and questions she may have for her doctor........it is a wonderful idea! I hope this finds you and your girlfriend well and I hope you have a wonderful weekend!!!!Keep us updated on how everything is going!
07-03-2009, 08:07 PM
You've gotten great advice so far...not much else to add. Just want to second Danica in saying that it's awesome that you are being so supportive. I wish my husband were more like that!!
07-04-2009, 09:35 AM
First, let me say that I think it's wonderful that you are so loving and supportive of your girlfriend. She is very lucky to have someone like you by her side while she is going through this. Danica gave you a lot of good advice. Not all of us on here are formally diagnosed, like myself for example. I have 6 of those 11 symptoms but so far all my blood work comes back as "normal". I have been dealing with these symptoms (whose #'s increase as time goes on) for over 10 years and it wasn't until recently that I even heard of Lupus. It is lucky that your girlfriend did not have to wait years on end and is able to start being proactive/reactive to her symptoms now. I know that a month wait is frustrating, but I think Danica's advise about calling the PCP for a refill and the rheumy for open slots is a good one. I have done that before. After a few days, the receptionist will get to know her voice pretty well and will want to try to squeeze her in, if only so she will stop calling! Good luck to you and your girlfriend.