Hi Everyone. I'm just wondering if any of you have experienced your rheumatologist (I'm sure I'll eventually learn how to spell THAT one..) telling you at first that you have mild lupus after your tests come back, then changing the diagnosis because "you don't want to have lupus, it's the kiss of death as far as insurance goes. We'll just call it psoriatic arthritis - the treatment is the same." It's rather confusing, because I can't find any information that discusses psoriatic arthritis with very high ENA/RNP and very high Sm antibodies, and no positive rheumatoid factor. There are others, but I can't remember off the top of my head.
I was put on hydroxychloroquine in early March, and it started helping the pain and swelling within about 6 weeks. By now, I've gone from a constant pain level of about 7 that spiked to a 10+ (scale of 1-10) to about a constant 2 level that spikes to about 8 with certain activities. I consider that good progress. But he has said more than once that I just don't fit the "normal" profile for someone with lupus. My understanding of what I've read so far is that there is no "normal" profile. I've had joint pain for decades, random fevers, sun sensitivity, brain fog...all for decades, and depression (treated now) for 6+ years. I only went for further tests when the pain was not helped by the strongest Mobic prescription. Not trying to do a laundry list here...I handled each "symptom" in what I considered a successful manner when it happened. Only asked for more help when it became unbearable.
I try to stay active. I'm an environmental engineer at a power plant, started karate last year (had to sit some out when the pain got bad, but still going), and thinking about getting back to swimming to ease the joint pain. I do get fatigued to the point where I need to take a couple fmla days here and there (and sleep til noon!), but my employer and supervisor are pretty understanding so far. At first I was pretty depressed with coming to terms with having a chronic disorder, but I'm trying to stay positive and as "normal" as possible. It helps that I'm getting more energy since staring treatment.
Anyway, back to my original question....has anyone else had their doctors do flip-flops on diagnosis?
Sorry about this being long...I'm just getting comfortable sharing about this, and I don't know anyone with lupus, or "maybe lupus".
Yep all the time- lupus is an autoimmune disorder and has a many changing face - there will be times where you do not fit the criteria perfectly and there is a LOT of overlap in the many many autoimmune diseases. I have frequently had my diagnosis changed to UCTD and even once Sjorgens - my labs right now are negative and my symptoms do not fit a lupus criteria-so a doctor unfamiliar with my past history would be correct in saying I do not have lupus.
me too, one dr says I have another says I don't my ana has always been positive others change depending on my flares/symptoms, I just started keeping track of everything that is going on with me in a log, a vary big log lol... I have to make light of it to get thru it, its hard but just keep you in mind not what every dr wants to change their mind and say usually it is for insurance reasons, some dr's rather say you have 10 different disorders/disease's to avoid calling it lupus.
Yes, last year I was told I had a positive ANA of 80 which is a low positive. In January I had a positive ANA of 160 and was told it may be fibromyalgia with my symptoms. In May I started with digestive problems and ANA was 1280. My primary care Dr said it was Lupus because I have many symptoms in addition to the positive ANA. My rheumatologist however is calling it undifferentiated connective tissue disease because I have symptoms of other autoimmune diseases also. She said I need to be on medication to prevent organ damage so she started plaquanil. Go figure so what does this mean?? Do I have Lupus or not I am not sure but it seems they treat it the same way for either. I stopped the Plaquanil after 8 days because it made me feel sick to my stomach worse than before and gave me diarrhea and made me itch. I also have an unexplained high WBC so not sure what is going on or what my diagnosis really is. It is confusing and frustrating and not sure where I go from here. Many others have said they have had similar experiences of being diagnosed, un-diagnosed and diagnosed again.
yes that has happened to me also my lowest ana was 560, I don't get why they cant make their minds up its like each one is trying to prove the other one wrong. I wish I had a dr like the show HOUSE yea he is a jerk but he gets down to the real problem. my first an was when I was 12 years old and it was 1650 the doctor never gave my mom the results I found out by going to a doctor a few years ago and having all kinds of test and he went thru extensively thru my records, luckily the test when I was 12 it was at the same practice that's how he found it a few years ago
The good news is that with Obama's changes to health care, insurance companies can no longer exclude you for pre-existing conditions - so we dont have to worry about being 'labeled' with lupus. Life insurance is another thing - I have no idea how much access they have to our medical records. But once you have it they can't cancel it.
As far as the diagnosis goes, its my understanding that if your chromatin antibody and dsdna are elevated, that's lupus. Its frustrating when one doctor contradicts what another told you. I recently moved and had to start over with new doctors and when I told my new rheumatologist what my old orthopedist said about my knees relative to lupus she looked at me like "you're joking, right?" ***sigh*** Now off to a new orthopedist......
My dr did thee flip flop, took me off Plaquinel and started treating all my symptoms instead, but I feel worse now and pain makes me feel like I have only one option. Am trying to bring things to order around my house and set my mind to it. Would try to stick it out if I could see an end of this tunnel. But I’m too tired to keep fighting. I wish all the rest of you find peace with your illness and Drs. This is my choice
It happened with me a long time go no insurance so polyarthralgia. He/she is doing you a favor. I was diagnosed later when I had insurance. Now I no longer have insurance again almost impossible to get.
I have all the classic signs to diagnose lupus but I’m sorta in the same boat but with other health issues too… They technically classify me as unspecified connective tissue disorder and I’ve been on plaquenil over a year
Oh and my ANA is positive w speckled and I have elevated dsDNA rash sun sensitivity arthritis degenerative disc in my neck and fibromyalgia plus now abnormal thyroid nodule
At least two others have replied with accurate information stating that President Obama's Affordable Care Act, as of January 1, 2014, PROHIBITS ANY INSURANCE COMPANY FROM DENYING COVERAGE, CHARGING HIGHER PREMIUMS, OR DENYING TREATMENT for ANYONE with ANY pre-exiting condition. Please hear this - it's critical to your wellbeing!
Regarding confusing diagnosis, I had multiple unexplained symptoms for about 15 years. Six years ago, my PCP finally referred me to a rheumatologist because he suspected I have lupus. This first rheumatologist did many tests and a thorough examination and then pronounced "You do NOT have lupus. You don't want lupus! It's is a terrible disease!" Well, for the following six years, being told that I didn't have lupus cost me a lot of pain and suffering and far too many trips to the E.R., often resulting in unnecessary angiograms because some of my symptoms indicated possible heart attack. The last heart cath. I had in January resulted in a serious emergency of nearly bleeding to death. The good thing that resulted from this episode was that my cardiologist, while looking inside the blood vessels to/from my heart said, "I'm seeing here what I see in my lupus patients." He referred me to a really good rheumatologist who quickly arrived at the correct diagnosis. He also got my records from the previous rheumatologist and said he's puzzled regarding why the first one said I don't have lupus. The new doctor said all the evidence was there all along to make a diagnosis! GRRRR! I definitely have lupus, fibromyalgia and Sjogrens and am (finally) being treated for all. And, now that I know what I'm fighting, I'm much better equipped to manage my lupus! I HIGHLY RECOMMEND - "The Lupus Book - A Guide for Patients and Their Families" by Daniel C. Wallace (fifth edition, 2013). This book has been incredibly helpful to me and my family in helping to understand everything about living with lupus. It's available through Amazon.com. I wish you all the best!
Carrie your post has me very concerned. You are correct you only have one option and it is to keep fighting!!! You have to stick it out for those that love you. We all do and I think I am pretty safe saying we are all tired but we will make it through this. Please tell me you are not giving up!! I will be praying for you please keep fighting with us.
Carrie said:
My dr did thee flip flop, took me off Plaquinel and started treating all my symptoms instead, but I feel worse now and pain makes me feel like I have only one option. Am trying to bring things to order around my house and set my mind to it. Would try to stick it out if I could see an end of this tunnel. But I'm too tired to keep fighting. I wish all the rest of you find peace with your illness and Drs. This is my choice
First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK for members in the United States.
snugglybug said:
Carrie your post has me very concerned. You are correct you only have one option and it is to keep fighting!!! You have to stick it out for those that love you. We all do and I think I am pretty safe saying we are all tired but we will make it through this. Please tell me you are not giving up!! I will be praying for you please keep fighting with us.
Carrie said:
My dr did thee flip flop, took me off Plaquinel and started treating all my symptoms instead, but I feel worse now and pain makes me feel like I have only one option. Am trying to bring things to order around my house and set my mind to it. Would try to stick it out if I could see an end of this tunnel. But I'm too tired to keep fighting. I wish all the rest of you find peace with your illness and Drs. This is my choice
Carrie, you have all of us concerned. PLEASE call a friend, suicide prevention or 911 . I have been where you are, but with help, you can come through the valley you are in. You are so dear and so loved..don't give up now. I promise there will be better days.
Carrie you really need to find a new doctor. There is no reason to give up. The doctor should have never taken you off plaquenil!! You take that and it protects your organs and helps reduce the pain and swelling. Then you treat the symptoms too, like painkillers or arthritis meds there are all kinds of options out there.
We are here for you to help you through the low points. Many people on here have been dealing with this for years and they have great advice.
Well I can’t get anyone to make up there minds and work together to help me. Years ago a doctor told me I had an auto immune disease he took a writing pen with the cap on and raked it a across my back and told my husband we would wait 10 min. And my back welped up like it was burnt he said my immune system was so messed up it was attacking things that wasn’t bad. My Ana count was 680.I have the butterfly rash on face. My C-reactive protein sky high. my sed rate was high just once. But everything else stays high. My kidney and stomach and ears have inflammation as well as some thinking issues and problems with my liver. I have bad balance problems and brain fog. The first doctor said Lupus the rheumatologist said if it was lupus you would be lossing weight. And said you don’t want lupus. I even went through some saying oh you hurt be cause your depressed. I wasnt depressed husband tried to Tell them that to …I was so tired of the pain I finally said OK maybe I am and i just dont know it…they put me on about 5 different meds oincluding lithium. With in weeks I was in a hospital suicidal. Because the meds made me that way. Finally they saw I didn’t need depression meds. Almost killed me. I get passed from doctor to doctor and I am tired . I keep up with all my blood work and look it all up on the internet. An all of my test show lupus only one doctor will say it the others use the fraise lupus like. Prednisone , nurontin and naproxen help. I just wish I could find a good rheumatologist. I am in Georgia. Any suggestions?
HI Carrie, I have gone through the same feelings and the concern I would be a burden to my kids. So I found states Washington and Oregon that have right to die. (medically assisted) The interesting thing is...once I learned how I could humanely leave
this place to the other side...I wanted to live. That was back in 1992-94. I was told at that time that I had ALS and had a short time to live. After 2 years I was still alive...against docs orders I started to exercise and dance a little...then rest for a few days. Most importantly I started flax seed. You can find how to use at health food store or in prior post with other health tips. I am a retired Chiropractor.
Essential fatty acids in flax seed help repair any damaged tissue in the body. I have also been healed from Meditation during a flare-up and asking the Holy Spirit to heal me. The meditation did something interesting...it is as if my Immune system made peace with my disease...so now it does not react and attack my tissue with white blood cells. I went off meds except for blood pressure) .I went for 5 years without a flare up. I just recently had one (due to a VERY stressful time)...went to a motel for a few days.... jumped in a swimming pool every few hours around the clock to cool the fire...also took meds till the burning stopped. I think the normal prednisone we make changes if we become dependent on meds all the time but each has to weigh their own situation. There is the brain and then the mind. The Mind is more powerful then any of us can imagine...because it connects to all minds. I am sending you healing thoughts and prayers to help you through this time. You are in charge of your destiny. My favorite prayer:
I am here truly to be helpful
I need not know what to say or do
for He who sent me will direct me
I am content to be wherever He wishes knowing He goes there with me
I will be healed as I teach others to be healed
ACIM A Course In Miracles
I am not as quick to tell people they should or should not chose to stay...I know about the other side and it is more then we could ever imagine. That being said...at 72 last Sept 1st I married the love of my life. I am glad I did not miss this.
I also have 4 grand children that I would have never gotten the wonderful joy of knowing. I wish for you a friend or counselor that can listen to you and help you through...I am not sure if there is a way to get phone number to you without putting it out here...I am new to this site. May the Peace of God be with you. Dee