I am a 57 year old female with longstanding osteo-arthritis. I now have severe bone spur formation throughout my spine and my knees are bone on bone. For 30 years I have had "reactive airways" Any upper respiratory infection would trigger , getting easily winded and the sensation that I couldn't take a breath. Breathing test showed compromised lung function but inhalers and nebulizers didn't help at all. About two years ago, I had chronic sinus inflammation which lead to constant sinus infections and airway involvement. I started to get low grade fevers (99-100) and would start to sweet out of the clear blue. I had brain fog, fatigue and felt miserable. Blood work was all over the place with sky high markers of inflammation such as sed rate, c-reactive protein. IGE, RDW etc etc. The number of white and red blood cells was normal but not the size. I went to an ENT who sent me to a rheumatologist, immunologist and infectious disease doctor. Everyone agreed that I have systemic inflammation but could not pin down what the cause was. The immunologist was convinced that there was some type of auto immune/connective tissue disease that has not yet presented itself. Ten months ago, I suddenly developed a large effusion. A liter of blood was drained. The blood started to re-accumulate and this time, I was in tapenade (upper right chamber was collapsing) I had a pericardial window. The biopsy of the pericardium showed both chronic and acute inflammation. I continued to have pericarditis despite taking colchicine. I developed tachycardia, elevated blood pressure and eventually palpations. Echos and a 36 hour heart monitor were negative for heart valve involvement or arrhythmias. A cardiac MRI revealed continued pericarditis. I was recently put on a calcium channel blocker which helped with the tachycardia, elevated blood pressure and palpitations. I sporadically feel as if there are sores on my gums but I don't see any. My nose has been so dry the past four or five months and I am so tired. The only way I can describe the fatigue is that I am tired to my bones. I continue to work, come home and just collapse. Thank goodness for take out and delivery for dinner for dh and my son. I am so tired that I had to force myself to drive to my daughter's house to watch my adorable11 month old grandson.
Two weeks ago, repeat blood work reveled elevated homogeneous ANA 1:320. A rheumatologist diagnosed me with lupus and started me on plaquinil. I am seeing an ophthalmologist for a baseline eye check next week. When I read about Lupus, I don't have a lot of the symptoms described. I do however keep reading that late onset Lupus could have a different presentation but I have not been able to find out what the late onset presentation is. The dx surprised me. Despite the ANA readings, the double stranded DNA was normal Does my history point to the possibility of lupus? I am debating going for a second opinion
Although I have not had all of your problems I have been diagnosed with Lupus even though I have had a negative ANA.Just because your Lupus test comes back negative does not mean that you do not have Lupus. Remember that you have to stand up for yourself because no one is going to do it for you. This is your body and you must make someone listen to you! My prayers will be with you.
You and me both. I also get frustrated with the constantly living with the fear of falling. I live with Lupus disease. Thank God every day, I don't come down ill. Prayers do help. I have weakness in the legs and Head Trauma Amnesia. I don't make quick decisions in fear it is the wrong decisions. I read but I get frustrated because the simple fact they are just words on a page because I have can't comprehend of understanding what the words on the page or in books is about, For me to understand what the story is about I have to read the book about four or five times. How quickly I forget.
Stand strong, I encourage you to stand up for yourself. As Piewacket stated in her comment, nobody is gone to stand up or have your back for you. Sending prayers your way.
The widespread information and the pericarditis are symptoms of lupus, well I should say a complication of lupus. Now with the ANA being positive, I think may have been all they were waiting on. I have only ha one positive ANA at 1:160 but normal double stranded. I have nine out of the eleven from the lupus symptoms list. Keep a journal of all your symptoms so you can take it with you to your docs. I still think you can get a free one from GSK. I hope they can get you feeling better.
spurs are normal part of aging...as is OA ...just the luck of where the spurs hit that can cause a lot of pain or none for some.
But usually people with SLE get RA as well OA since it is normal part of aging.
I really cannot say ...but if you are looking for some diagnosis, what does your doctor say? Are they sending you to specialists or at least an excellent internist? I would start pushing for specialists to help together to find out if all the things going wrong with you are tied together or just bad luck and independent of one another.
I know you are very tired....hopefully a friend or relative can help to be your advocate, Keep all your tests and records yourself and bring them all with you every time you see a new doctor. I would not try and put expectations on what is wrong with you as so many things are similar to lupus.
Just would be very sad but good in long run if you find out few months on one or two drugs will help clear up most if not all your health issues.
I am really sorry you are having such a hard time ....but start asking doctors if you were their family member where would they send you ....what tests etc....what journals should you keep on your health.
I always get 2nd opinion in case such as yours too. Especially when DNA does not point towards it which should be clear cut as well as you do not sound like you have hardly any of signs of SLE.
I'm sorry you are going through so much and so suddenly. I would get a second opinion for peace of mind. Just know that it is not just test results. There is a whole list of criteria. Just so you know I've had issues with my sinuses. I had to go to the ER because it got so bad I had a severe migraine, facial pain and could not keep food or water down for five days. It is terrible but the sinus issues could be autoimmune. Mines got worse when my boyfriend and I adopted an African Grey - triggered the issues again and they got really bad.
One thing you could try is a teaching hospital. Here in South Florida there is a Cleveland Clinic. Just know that if you go for a second opinion things can get confusing if they do not agree with each other.It would not hurt to try. I consider myself lucky that I was diagnosed as quickly as I was. What confirmed my diagnosis was when I responded to the meds they gave me - as expected. If you were given meds stick to them and give them time. It took 6 months for me to finally realize the improvement.
My primary had suggested that I keep a notebook with all of the test results etc. That is what I have done. Boy is it ever thick. I am seeing the immunologist this Saturday to go over everything with her and see what she thinks about lupus. She is the doctor who felt that there is something connective tissue going on but it had not fully presented itself. I had gone to Cleveland clinic this past summer and got no new information except that I continued to have pericarditis. My IGE was sky high. The rheumatologist said that she couldn't explain the elevated IGE. After paying close to 2 grand for round trip airfare, hotel and food, I didn't get any new answers. I have gone to Mt. Sinai in NY as well as Hospital for Special Surgery. Until three weeks ago my ANA had never been elevated!!! Over the past 14 months, I have seen two ENTS, a geneticist, pulmonologist, an infectious disease doctor, my primary, two immunologists and three different rheumatologists.
I discussed everything with my primary and asked her if I should get a second opinion about Lupus. She said that the rheumatologist is quite good and she would feel comfortable if I wait until my one month follow up to see how things are going. I do hope to gain some more insight from the immunologist on Saturday as long as this crazy snow storm doesn't result in the appointment being cancelled