Hello! I am 27 years old, and I have just been diagnosed with SLE. I was diagnosed previously (in 2005) with Fibromyagia, after dealing with quirky minor health problems my entire life. I began having back and knee problems around age 10, and was in physical therapy for years. At 14, I was diagnosed with Endometreosis after my menstrual cycle would leave me bedridden. I had a child at age 19, and there was so much scar tissue and the endometreosis got so much worse, that I had to have a hysterectomy at 21. I have also had IBS, frequent headaches, muscle spasms, chronic infections and viruses (walking pneumonia, bronchitis, upper and lower respiratory), restless leg syndrome, sensitive skin, and chronic anemia for most of my life. Unfortunately the doctor who diagnosed the Fibro was "pill happy", his solution was to write me 15 different prescriptions, and I'm just not having it. I'm not a pill popper.
In the last couple of years, the symptoms got weirder. All of a sudden I couldn't be out in the sun for more than 5 minutes without feeling nauseous, faint, and developing a sunburn-like rash on my chest, arms and neck. And at random I will get the same rash with NO sun exposure, and it will be on my back, stomach and legs. You can literally SEE muscle spasms in my arms and shoulders, it looks like it's jumping out of the skin. The pain in my cervical spine has gotten so bad that in the last 5 years, it will randomly lock up and it takes 6 lidocaine shots to get it to where I can even move. I'm stiff every morning, and usually for most of the day since I have a desk job. I get the "brain fog" and my short term memory *****. One of my best friends has SLE, and she has told me for years that she really didn't feel like Fibro was my problem - there was an underlying condition that was. After having my wisdom teeth out this past year sent me into a flare up so bad that I knew I couldn't continue to hit the IGNORE button, I found a new rheumatoligist/immunoligist that specializes in auto-immune diseases.
Upon him doing a physical examination and 5 X-rays, he informed me that I have inflammatory arthritis. He could feel the swelling in my fingers, and he showed me on the X-rays where I had fluid and inflammation in my fingers and my wrists. He really suspected Rheumatoid Arthritis, but sent me to get the full range of tests. 2 weeks later I went back in, and after looking at my results, he diagnosed me with SLE. Here's what keeps nagging me - my ANA was negative...BUT, my Anti-nDNA was positive. I realize that Anti-nDNA is specific to SLE, but I also keep reading that Negative ANA Lupus is now considered to be rare. I've discussed my doubts and concerns with my extremely seasoned and knowledgable friend with SLE and she believes firmly that I DO have SLE..and with all due respect, my diagnosing doctor has been in practice for 45 years. Is there anyone else out there with Negative ANA Lupus? Should I get a second opinion? I know there is no test that tells you that you absolutely HAVE SLE..but I'd just like more feedback! Sorry for the very long post, but the background info is always helpful! Thanks everyone!
I recently called the lupus foundation and they said that the ANA varies and is sometimes negative for unknown reasons. It i actually a poor test as far as disease activity and diagnosis. I think that sun exposure has some baring on what the ANA level is. If you had been avoiding the sun, then you ANA level would be a reflection of that. I agree w/ your dr. and your friend. Ds-DNA is very specific to lupus dx. Along w/ the symptoms you described, yes, I agree.
I agree also.Your ANA can and does fluctuate and will change patterns.
The Anti ds-Dna is VERY specific to SLE and is considered more indicative of Lupus than a positive ANA is.
Your doctor may test you at a later date and get a positive ANA or you may not develop one for years or never.The Anti dsDna is more what the doctors will probably look at and base the diagnosis on.
Kind of hard to swallow but in a way you got lucky really.You will get treatment for the proper illness and appear to have a rheumy who doesnt base everything on the first thing he sees(as he ran labs after finding the arthritis)sounds like you have a good doc and a diagnosis too.Alot of people struggle to get that.
I popped ANA and ds-Dna positive along w/most of the things you listed and have had issues since childhood.I have always considered myself lucky sounds weird but when I got too sick to go on w day to day I managed to get diagnosed and get treatment quickly so I consider myself lucky when I read about people who have bad docs or disbelieving ones and spend years in limbo trying to confirm or deny.
I wish you much luck with your doctor and good health.Hope you and your family have a merry Christmas.
Yes, I definitely avoid the sun at all costs. I have a very pale complexion anyway..but the funny thing is, in my teens I was a tan junkie. I laid out in the sun and also went to tanning beds - it took having 4 skin biopsies (all benign, thank goodness!) to make me realize that being tan just wasn't worth it. When I was about 23, I began to notice that I just didn't tan well anymore, I'd get red and blotchy within a few minutes. Within the last two years, this became a full blown red sunburn-like rash within minutes, and the heat itself makes me feel very ill. Living in the South, with it's high temps and ridiculous humidity, does not help matters.
Thank you for your response! I'm thrilled to be on here and have input from others with similar experiences. It's always a relief to have others who understand the bizarre symptoms.
You're right, it is hard to swallow. Especially since my friend's lupus was so severe when she was diagnosed. I told her I feel like an imposter! But, I do know that it affects everyone differently. No two Lupie's are the same. :) I have a very hard time with not being able to just DO things. Last year I went on a fitness kick and lost 47 pounds through hard exercise - it brought on two pretty large flare-ups and my symptoms have worsened overall. When I was diagnosed, my friend all but threatened me..she told me I have to SLOW DOWN, and now I've been trying to take it easy and rest more often, stop pushing quite so hard. It's a challenge when you see yourself in the mirror and you look fine - a little pale, a little tired - but fine. But then you do something simple - for me it's using a hairdryer and fixing my hair, I frequently feel like I've just rowed a boat across a large lake JUST from doing those two things. It's crazy..but now instead of being depressed about it, I just let it serve as my reminder that there is a valid issue that needs my attention and concern.
Thank you for your response! And Merry Christmas to you and your family as well.
ALSO - Do you mind sharing your experiences with different medications? This doctor had prescribed me Methotrexate, and upon my doing my research on it and it's side effects, I decided that I really didn't want to take that. My friend was horrified that this is what the doctor prescribed right off the bat, because it is such a severe drug. She takes CellCept - anyone tried that? I plan on discussing the possibility of my taking that when I go see him after the first of the new year.
My doctor tried the generic to Plaquinel. The most common side effect is diarrhea for the first month. I thought, I already deal w/ that, so that's not a problem. It takes a month or so before you see any results. When I can't seem to come out of a flare, they give me prednisone.
If you have organ involvement, they might want to get the big guns out though.
Yes, take very good care of yourself. Many people w/ lupus also have fibromyalgia. Sleep (deep sleep) is really good for that. I take benadryll and Melatonin (supplement) to help me sleep good.
Methotrexate is a first line choice of a DMARD http://www.health.com/health/condition-article/0,,20327393,00.html
It is usually one drs go to with arthritis symptoms involved.Its used alot in Rheumatoid Arthritis and should help you with the joint issues.It is given on a weekly basis and I would recommend(as I have a close friend on it)to take it on a Friday to give yourself the weekend in case you are tired(it can have this effect)make sure to ask for an appropriate FOLIC ACID dose and script if needed it will help cut down on side effects of the med itself.
Cellcept is used in organ transplant patients to control the immune system so the body does not reject.I would prefer the MTX with your issues.
Please do not take this the wrong way but realize that like you said NO two SLE patients are the same and the med choice made by your friend and her doc may not be appropriate for your case and symptom activity.
If you have issues about the med ASK the doc why did you choose this one and what can I resonably expect as side effects and symptom relief.It may be necessary to change to a different med to achieve the results he is looking for.None of these meds were really intended for SLE and until something is made for it unfortunately they are all we have.
If your friend wants to attend a drs appt with you to voice her concerns and ask(or hear)why he is making the decisions he is it might be helpful.If you like your doc and are confident with his treatment(so far he sounds really reasonable)YOU need to trust him and follow up and ask while you are there about the choices he is making for your care-he should not be bothered by this as most docs like a patient who is involved in their care and can understand and ask intelligent questions.
Dont let your friend freak you out and remember just because the cellcept is working for her does not mean it would be an appropriate choice for your particular symptom presentation.The docs like to start with the least toxic of the DMARDS and MTX is it for the symptoms you are having-then if it doesnt work they can explore others-but they always go for the least damaging first as ALL of these meds including Cellcept carry not nice side effects.
Much luck with your treatment plan and hope all is well.
I am glad you posted all your symptoms now I dont feel completely wierd. I am 31 recently diagnoised 97% sure of possble mild SLE. I too have ALOT of muscle twitching. You can see it in my face, my shoulders & arms my legs, bascially it goes where it wants & when ever it wants. For me I noticed I became lactose intolerant and wierd rashes on my elbows, knuckles and knees that never happened before when I was pregnant with my youngest child, happens every single winter since then for the last 4 years now. That was about the just of that, then this past summer summer I started to burn rather easily. I am fair skin but that is not normal for me since I adore the sun I know my limits without sunscreen. But now the warm sunshine makes me feel achy even in my bones, really bad joint pain, dizzy, and very extremely fatigued so badly that I couldnt icing cupcakes without setting my arms on the counter at one point I couldnt even get out of bed. Then all the sudden the rash appeared on my face that I never noticed but my son did. Just started as a red splotch on my face spreading then it progressed month to month instead of starting as splotches it presents itself fully, but fades quickly. I am worried about the summer myself because I absolutely love being outside in the sunshine. I have two young children and I am trying to figure out how I am going to deal with it this summer. They are going to want to play and I am going to want to play with them, if its possible for me to get out of bed. I am not currently on any medication and I don't want to be if I don't have to be. But for me they are concerened because I have had eye issues. So I get the pleasure of having echo cardiogram & plenty of blood tests and an MRI of the brain. Fun fun fun. I am hoping it isnt too much since my ANA wasn't very high, but I also wasn't much in the sun the day I had the tests done. And being that its winter time I am kind of thankful, cause I can go outside and not feel as if I'm in the middle of a very intense flu, not that I want to stay outside that long anyway. God bless you & take care of yourself!
Hi, I am glad you were able to finally get a diagnosis. I am 37 and having symptoms similar to yours. I am so glad I read this today because I still do not have a diagnosis and feel awful. Your story has given me hope that maybe I will get a diagnosis. My doctor said to me last time-you seem dissapointed that you are not sick-I think what they don't understand when we have these symptoms is not that we know we are sick-we are dissapointed that we don't know what it is. Last year I had a positive Anti-Ds-Dna and low complement(did not check ANA-had a past positive result) and then they tested only my ANA at a different lab and because my ANA was negative at that lab they did not test my ANti-Ds-DNA again. Needless to say, my doctor said the Anti-DS-DNA was a lab mistake and I don't have lupus despite my symptoms.
I am sooo excited! I had just posted here for the first time today and thanks to you, I think I have my answer about what to do next. I've spent about 6 years seeking an answer to my debilitating fatigue etc. Although there is autoimmune disease in my family, my MDs ruled out Lupus immediately based on my always-negative ANA. Now I know why my ANA might have always been negative - I always avoided sunlight like the plaque!!! Now that I've started using tanning beds to get vitamin D, I'm having constant after-tanning reactions of greatly increased weakness and fatigue, muscle cramping, and renewed appearance of right hip pain from years ago which lasts for days after tanning: Lupus? I never had an anti-DS-DNA. Shucks, no MD ever suggested it - the turkeys!!
Anyway, I strongly react to being in the sunlight or artificial UV rays even though I have no diagnosis yet, I have lupus symptoms with a negative ANA, so dah06, you're not alone!
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