Hi, another new member
I'm not sure what I'm doing here but an internet search led me to the forum.
I was diagnosed with Lupus 18 years ago and then about two years after when I was much better I was told that my blood tests had returned to normal so it couldn't be lupus after all. A happy and relieved girl I was.
Last week I developed some lupus type symptoms when I came down with a cold virus(severe fatigue rash and sore feet) and have been to my gp today to try and calm a mounting panic and arrange for tests.
I've been sent away with cream and antihistamines for the rash and advised to come back in 2 weeks if it hasn't gone. Standard immune blood tests are arranged for Friday but for some mysterious reason unknown to me the gp said she wouldn't do the ana test.
Researching today it seems that normal blood tests do not mean that Lupus was misdiagnosed, they can be normal in remission. Is this correct?
Hi Stef and welcome to WHL! We are so glad that you found us! Although I don't want to alarm you I will tell you that blood work in Lupus patients fluctuates. That is one of the reasons that many Lupus patients have a hard time getting diagnosed. Sometimes the meds will get them under control, sometimes a period of remission or a less active period will allow them to return to normal but Lupus itself doesn't simply go away.
There is no need to panic though. If you have been in a period of remission for 18 years then most likely they will be able to get yours back under control. I would like to say that I am shocked that the doctor didn't do an ANA test but I am seldom shocked by doctors anymore. Try to relax (I know, easier said then done) and wait for the test results. As you most likely know if it is Lupus stress will only make it worse. The good news is that you have found us now and we will be here for you if you need a place to vent, talk, laugh or cry.
Originally Posted by tgal
I'm feeling somewhat distressed, you have confirmed my fears.
There are some things that I have worried about over the years such as having the most terrible memory and concentration, I guess that wouldn't be so odd for someone with lupus.
My blood tests are arranged for this Friday with the nurse, I haven't had them yet. I'll try and get her to do the ANA. Is there anything else specifically she should test for? It's been so long I've forgotten a lot.
The nurse is not going to be able to do any test not ordered by a doctor. Have you considered going to a rhuemy? They would do all the blood work for autoimmune issues there. Not saying it will or won't comeback showing anything but at least you would know they were done. You will find many topics in this forum about people who fight the blood tests because they go back and forth and a few about ANA negative Lupus.
I know this is scary. I understand you feel like your life is spinning out of control at this moment and you are not sure how to stop it. Try not to look too far out in the future. Right now we are going to take one day at a time. One step at a time. Take a few deep breaths. It is going to be OK. Others will be here soon and all of us will be here for you as you go through this process.
As for the memory issue... you might get a laugh if you read the "You know you have brain fog if" thread in Laurie's Lounge
I have to have a referral from the GP to get to the rhuemy. It's been a long time since I saw one and I've been discharged and moved since so sadly I can't just go back to the old one. I might be able to get the nurse to speak to the gp on Friday to agree to the test. It's worth a try.
Originally Posted by tgal
Thanks, I'll have a read of that thread and see if I can lighten up a bit! I have two reports to complete by Friday and should really be getting on with them. Ho Hum!
Good progress this morning. The nurse agreed to add the ANA test to the routine inflamation indicator tests the GP suggested.
Originally Posted by Stef
I had great fun reading the 'You know if you have brain fog...' thread. I shed a tear or two to find that I wasn't a total idiot to forget to add the lemon and orange zest to my Christmas cake and have to take it out of the oven quick and stir it into the mix in the tin, and I'm not the only one who can turn a room upside down searching for a phone or keys that were there a second ago when they were in my hand the whole time!
I am so glad you were able to get the test done! I am also glad that the "brainfog" thread helped. That is the reason it is there and the reason we are all here. It IS helpful to know that we are not alone. Often we feel like we are going crazy or living in a world no one else understands so it is so nice to find a place where people DO understand what we are going through!
Thank you so much for letting us know how it went this morning! Please keep us updated when the results come in!
Stef it is great news that you have been in remission for 18 years. Whether you originally had Lupus or not 18 years ago irrelevant. You need to remember that you have had a fantastic 18 years free os symptoms. Well done. But I must warn you, stress is a HUGE downfall, so try to do some things that make you laugh.
Originally Posted by Linda From Australia
Looking back I don't think I have been free of symptoms, I seem to have mind related symptoms such as severe headaches, anxiety, concentration lapses, occasional speach problems, some clumsiness and terrible memory troubles and mind blanks that I now know as fog. I get numbness and I have Raynauds. I also had premature labour problems. I didn't realise these could be lupus.
However, I have definitely been extremely lucky and have been free of active lupus in terms of a flare until possibly now; no pain or rashes.
I need more sleep than most, generally nine hours seems to work ok, and I am able to run at ultra marathon level.
There have been short bouts of unexplained fatigue but apart from the headaches no pain, and oh boy, I still remember how very much it hurt!
Welcome to WHL.
I think that a lot of us can look back over the years and see that mild symptoms of AI issues were there all along. I know that I had mild symptoms as a teen and young mother, but it was never diagnosed and I lived my busy life.
It's just been in the last few years that I've gotten a diagnosis and the symptoms have gotten bad enough to be noticeable, and I'm 53 now.
Good luck with those tests - let us know what you find out.