This is my first post, blog, thread?!? I was 'diagnosed' with Lupus the day after MJ died. I knew very little about this disease, and as I talk with more and more people, I am not convinced that I have it. Here is a little about my experience so far...I was someone who was training for a 1/2 marathon, in the gym everyday, or now that the weather is nice, running outside. Then one day, I woke up and decided I was too tired to go..then another day...then I woke up feeling very stiff and sore in my hands, wrists, elbows and shoulders. After a couple weeks, I decided that something more was going on. I went to the doctor for some tests, 5 days later she called me to tell me that I had Lupus.
After sharing this with my mom, she decides to enlist the help of her chiropractor and another doctor that she knows. She gave them my symptoms and they say that 1. There is no way I have Lupus and 2. They can't believe that my family doctor made the diagnosis herself? I am just so confused and I don't see my specialist until August 3rd? Last week I ended up in the Emergency Room in Kansas City with pneumonia. The ER doctor also questioned the diagnosis. Kept asking me questions about how she came to that conclusion, and me not knowing anything about the disease, failed to ask many questions when she called me to tell me. It's frustrating, I have my doctor telling me that she is sure it's lupus based on my blood work and medical history. I am currently on an anti-inflammatory medication, prednisone, avelox, and an inhaler. I have not slept in 2 days since either the prednisone or the inhaler makes me feel like I am on speed.
I just wish I knew if it was Lupus or not. I tried to call the specialist that I am going to see, but have yet to get a phone call back. I tried to talk to my family doctor about the doubt that people around me had, and I think she just got offended. I have clearly not handled this correctly, have not asked the right questions. Does anyone have any great advice, or has this happened to anyone else?
Hello and welcome to the site so glad you posted here.But sorry you are going through this.Many members with more knowledge about Lupus than me will be here soon to help you,so you hang in there.Sorry you had pnemonia and hope you are healing n resting.
For me,at Christmas i was diagnosed with Lupus BEFORE blood results came back.After i received the blood results i was told i have NOT got Lupus. I am having bloods tested now every 6 weeks as the Doctor still is unsure whether i do have Lupus.
Many members here have had symptoms for years and it has taken many years to actually find out what is up with them.
For your Doctor to diagnose you with bloods,does sound right to me.For many Doctors,they do sometimes find it hard to give patients a diagnosis and some are not fully knowledgeable about the Lupus symptoms so question patients when they say they have been told they have Lupus.....but sometimes the diagnosis is correct.
You hang in there.Call again on Monday to ask your questions to your Doctor,but dont worry.You'll find many members will come here to your post and help you and give fab advice.
I hope today you feel a little better and try and enjoy the day even with the worries you are going throough.We all understand you.Let me know how it goes.
So far me,well i feel like you,totally exhauusted,joints n muscles hurt,i have fibromyalgia,Asthma,IBS,Raynauds,depression n anxiety which comes as a free package ahhhhh with insomnia,acid reflux.They say i have Chronic fatigue syndrome /M.E. So i am waiting for a 'proper' diagnosis.Until then, i post here and everyone helps me through the days.
Lots of love Amanda.xxxxxxxxxxxxxxxxxx
I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx
sorry to hear about your diagnosis (which i think came two days after mine).
The first thing I would reccomend is that you get a copy of the lab results from your doctor. That will tell you exactly what tests were run, and what your levels are. Typically -- as you'll read in many other places on this site -- it takes 4 of 11 symptoms to get a diagnosis of lupus. From what you've described, (putting the bloodwork aside for a moment) you certainly have something that points to lupus or another connective tissue disorder (such as rheumatoid arthritis).
As for your lab results, you could share them with some people here, or contact a lupus educator (find them on www.lupus.org). There are many different tests and techniques that can point to lupus, and different labs have different ways of showing results.
In my case, I had some joint pain (not near what you've described), a couple random fevers, and overwhelming fatigue. I was convinced i had Lyme, so I pushed the doctor to keep running tests. He suspected RA, so he ran ANA, Rheumatoid factor, and DSDNA. All were positive except the Rheumatoid factor. Result - a pretty clear lupus diagnosis, which was confirmed by my endocrinologist (I'm diabetic too). Like you, I'm waiting to see a specialist for a solid, solid confirmation...but for now, I'm pretty much just figuring I have lupus.
Hang in there. I really think the time right after/during diagnosis and before you really get 'real' help is the hardest to deal with. It sounds like you're really active, too, which I was -- and I'm really struggling with the fact that even a moderate workout makes me feel like crap for the rest of the day, instead of energized. Oh well, gotta play the hands we're dealt, and find the good in everything. Hop on here whenever you need a boost -- people like Angel and Oluwa and Chriss (and many many more!) are awesome and will really help pick you up when you need it..
start a journal about your issues that the best thing so when you go to the doctor it will help. It has helped me many times. Also write down any ??'s you many have take them with you. ASK ASK ASK as many ??? as possible that way you will know what's going on.
And if you don't agree get another opinion I have had many opinions over the years...
Never be afraid and know that we are all here for you when you need us.
SLE Lupus diagnosed 8/8/11
COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
Half dead, cripple and crazy but still above ground.
Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline
first, welcome to this great group of special people. You will find an abundance of knowledge, experience, and compassion among our members.
Sounds like your blood work came back positive on your ANA count. My ANA came back positive for 13 years before my dr. finally was able to make the exact diagnosis of lupus. There are so many auto-immune diseases that will register with a positive ANA, so it really takes the combination of the blood work and your medical history to make the precise diagnosis. Your GP may be exactly right, your symptoms certainly coincide with the symptoms that many of us deal with.
I am glad you are scheduled to see a specialist....hope it is a rheumatologist. Like earlier advised, make a list of the different symptoms that you are presently suffering from....also, include any symptoms that you have had in the past. Lupus is an intermittent disease, and effects different things at different times.
glad you found us, keep educating yourself, and you will be able to participate in the final diagnosis.
So sorry you are on prednisone....i don't take it because of the side effects, but many of our members do. Yes, it definitely affects your sleep.
share a smile today
Hi and Welcome;
As has been said by other members, it is possible to be diagnosed based upon blood work and your medical history. It would be helpful if we know what lab work was tested and what those results were. You have a right to know the results of your lab work, so you might want to ask your doctor for them. We can take a look at them and try to explain what the results mean.
Also, I do hope that the specialist you've been referred to is a rheumatologist. However, my Lupus diagnosis was done by my primary physician, so they are quite capable of making a diagnosis. After my diagnosis, I was then referred to a rheumatologist for treatment and care.
You've been given good advice about keeping a log of your symptoms and taking them to your doctor's appointment with you.
In one sense, if you do have Lupus, you are lucky to have a quick diagnosis and a doctor who immediately began treatment for your symptoms. So many of us are dismissed by our doctors and have to suffer for weeks or months with no treatment for our symptoms. So, if you do indeed have Lupus, you are ahead of the game by having a doctor who believes you and who acts upon your symptoms.
I hope that you get some concrete answers soon, but please know that with Lupus (and any other auto-immune disease), concrete answers are a rarity! In the meantime, we are here to help you in any way that we can and to assist you in understanding the process. You are not alone!
Peace and Blessings
Look For The Good and Praise It!
Always ask for a copy of any test results you get i do everytime and could publish a catalouge with them. Bonita
What a frustrating ordeal! My symptoms were so obvious that I did research online and went to my doctor and said "I think I have Lupus," but I can imagine how anxious you must be about this whole situation.
Not that you want to be taking anymore drugs but you may want to ask your doctor to be put on some light sleep aids. When I was on the really high doses that's what my doc did and I was eventually able to get a good nights sleep.
I would also recommend getting a second opinion regardless of the diagnosis. I had all the obvious symptoms and my blood work came back positive for ANA and I still went to see two other doctors. The funny thing is my rheumatologist at the time was actually the one who encouraged me to get a second opinion. It also helps because if you do in fact have Lupus, having a good relationship and trust in your rheumy is extremely important, so don't settle..."shop around" if you need to.
Another thing that can help is keeping a positive attitude. I have always been an athlete but because of the various symptoms (and side effects of prednisone) I was kept out any strenuous activity for a while. This past year (two and a half years after my diagnosis) I was back to running 8 miles (almost) everyday and was doing spinning and yoga too! So you may go through some rough patches but there is hope to getting back to feeling like your old self and even running a marathon!
Good Luck and keep us posted!