I am glad to find so many others who are going through this lupie roller coaster along with me. I am going to get a copy of my blood tests from the gp tomorrow. I have had symptoms of Lupus for a long time however, the symptoms have gotten worse. I was told that I have a neg. ANA but RA was high. The rheumy who did the tests said that a high RA is normal. I just want to see the test results myself. I had to change gp's because the other was treating me as if I was making a big deal over nothing. The new gp takes me serious. He sent me to a pulmonary specialist who feels that Lupus may be the culprit. I have had the following symptoms:
red rash on my face (old gp said it was rosacea)
red bumps that break out on my face, shoulders and upper back
pleurisy (4 times in 2 yrs)
sores inside my nose
hands & feet that swell and turn red with bad burning and itching
fatigue/aches throughout body (feels like pulled muscles all over)
anemia on blood work (hate being so pale and tired)
swollen glands in neck and tonsilles
crazy tender spots on different parts of body where it hurts to touch it
shortness of breath
It's hard not to feel like a nut case when dr's are looking at you like you're making stuff up for attention. I put up with alot of these symptoms until the last couple of yrs because they have gotten worse. They come and go but pleurisy is real hard to ignore.
I am still going through the diagnosis stuff but I hope someone else can relate and maybe this will help them feel better. I wish it wasn't so hard to get support and the help that you need. We know our bodies better than anyone. I am an EMT with the fire dept. and it's hard to help others when you feel bad. I also have 3 children and a husband. I don't have time to be sick anymore than anyone else. I guess I am just venting frustration also along with hoping someone else gains some "gosh, I know what you mean!!" from this.
Hugs to all of you who are struggling with Lupus or are just trying to find out what's going on with yourselves. Web Md also has a wonderful Lupus support message board with loads of info. God knows we need all the info we can get.
Welcome Your story is certainly not unique unfortunately, many people feel the same way that you do. And the doctors do write us off as "nuts" if we aren't cut and dry. Now that being said, your situation IS cut and dry!! It is NOT normal to have a high Rheumatoid Factor (I assume thats what you meant by RA). That test can indicate Lupus OR Rheumatoid Arthritis in some patients. Just because your ANA test is not positive does NOT mean that you dont have Lupus. That Rheumy sounds like a butthead too! There are so many of them out there. Please NEVER take what they tell you to be "The Law". Often they try and tell us stuff that isn't right! You need a good Rheumatologist that specializes in Lupus patients. It would be good to get treated so that you can feel better and get on with it! And the heart stuff is not fun either, you may have Pericarditis, which is inflammation in the heart muscle. You are the typical Lupus patient, I can't believe that they won't diagnose you. Well, I am cut and dry and had to travel all the way to London England to get diagnosed because they were not good to me here. They had me written off as crazy but i got out before they killed me! I went to St. Thomas Hospital in London and saw Dr. Graham Hughes. What a man! He is the best of the best in Lupus. Had me diagnosed in an hour! The important thing here is that 1) Your GP believes you and 2) You find a good Rheumatologist
You also need to get your medical charts and "pull out" all the odd stuff from over the years. Take pictures of your rash too.. for future reference. Did your GP do a biopsy of it to see if it is Rosacea? If not, tell him that you want it biopsied and I bet he will squirm. This rash is probably a LUpus rash, and if you have it biopsied by a Dermatologist it will probably come back saying "Lupus!" Anyway; please feel free to jump in with us and its nice to meet you!!
Thanks for the response! I bet you all get tired of hearing about others who have a hard time getting diagnosed or ignored. I think that I have learned a lesson about not relying on a doctor to actually do his or her job. Seems ridiculous to have to get copies of blood work and decifer it yourself and with others. Wow, and to think you had to go all the way to England! Geez, I was complaining about going 35 miles to Columbus, Ohio to see a better doctor.
I can't wait to get my copies of the blood work because it will at least feel like I can understand what it means and I have some sort of control. Not that I can diagnose myself but just like everyone else, you get so tired of feeling so awful. I am a medic with the fire dept. here and sometimes when I have to be in the cold or have to lift a bunch of weight I wonder if I will ever be too sick to do what I love to do. I won't get my fire card and be a fire fighter because I think I am too physically weak and it makes me angry. I have lost too much weight and I feel like a bag of bones. I always look pale and I just want to get diagnosed and be able to fight this somehow. I am a horrible sick person. I have a hard time taking it easy. I love what I do and I would really be a basket case if I couldn't do it anymore.
Enough whinning from me. I do appreciate the support and response. I am very happy to have found you guys and this msg. board. I will be hangin around supporting others because it's the only way to stay sane!!
I never get tired of helping people that's for sure. I am glad that you are going to stick around with us, you can learn so much!! Trust me on that one I do understand about being weak.. its part of this lovely stuff. I can't wait to read your blood results, please post them and I hope I can help. The high Rheumatoid factor is a huge RED flag for me.. I don't ignore things like that. And the rosacea too. Take care and see you soon
This is the first time I have posted to this board. In fact I just found it. I have Systemic Lupus ... SLE to be exact. I was diagnosed really quick, which is a mirical in this day and age with Lupus. It did take a very intelligent Dematologist to get a positive ANA for me though. I am not a lab tech, nor do I play one on tv (sorry a little humor), so I don't understand why or how these test work. Here is what I was told. True or not I don't know. I had many ANA's before I got a positive one. I went to a Dermatologist because of a vascular rash on my hands, and purpura (I know that is not how you spell it) on my legs. He sent my lab work to a local lab AND to the University of Colorado Medical Center lab. The local came back negative again. The one sent to the University came back extremly high positive. I was told that when they are testing for Lupus there if it comes back negative they automatically dilute it and run it again. Now, I have told other Drs. about this and they seem to know what I am talking about and put something in on the test when they see fit to run another one. Whew!!! That was windy huh. I don't know if this will help anyone or if I am just running around in Lupie fog not knowing what I am saying.