I haven't been on the site in a while because I have been dealing with health issues and actually went to the mayo clinic. I am going to apologize in advance...cause this will be a lengthy post.
Let me start by saying that I have gone over the symptoms of Lupus and other auto immune diseases over and over and over for the last three years. I have, over the last many years, had almost every symptom of Lupus. I know that sounds crazy...but its true. For almost three years I was told that the doctors suspected MS. That has finally been ruled out. I have been treated for 6 months now for Rheumatoid Arthritis...but per the doctor at the Mayo Clinic last month...I do have inflammation, but he does not believe I have RA.....the strange thing is though, when I got my paperwork back from the clinic....RA was still listed as a diagnosis. I have every sign of Sjogrens, including severe dry eye and even nerve damage in my left eye, I have a perforated septum in both nostrils, and I have severe dry mouth which has actually caused several teeth to actually fall apart in my mouth, I have had four teeth pulled this year!!!! But when they did a lip biopsy for the sjogrens, it came back normal...only to find out later that the results may not have been correct because I was receiving steroid injections in my back at the time of the biopsy.
Anyways, I also have had a high Rheumatoid Factor for approximately a two years, but when I went to the Mayo Clinic, my RF was normal for the first time in a year. I have been dealing with yeast type infections in my mouth and have been seen by the doctor for three different types of rashes in the last year. I currently have a fungus infection on my neck which has produced lesion type rashes on my neck. I could go on and I. I have severe bruising, I have been having strange horrible swelling in my left leg. my leg and foot swells so bad that you cant even tell its a foot. I have fibromyalgia. I go for cognitive retraining because I was diagnosed with mild cognitive imparement. I have pain and muscle contractions and spacticity on the right side of my body....including my jaw, arm, and behind my knee. I suffer from migraines. I really could go on and on and on. my newest symptom which is driving me nuts and I have no clue if it is related to anything but is really driving me nuts is itching. just itching. I cant stand it and nothing seems to help it.
Sorry to go on and on and on...but I am really at my breaking point. I went to the mayo clinic. they ruled out ms and other neurological conditions that we were worried about. they have found out why I am incontinent. my white blood cell count was low and my cholesterol and the sugar in my urine was high. they found inflammation in many parts of my body. they even found that I had some slight swelling in my brain in an mri that I had several months ago. I have joint pain and inflammation in my joints, they found something wrong with the femur in my left leg, I have spurs on my spine and on some bones throught my body. they found some deformity in some of my bones including both feet......
when I had my last appointment at the mayo clinic. they said that they ruled out neurological issues but that I could not stop seeing my neurologist because of my symptoms I would still need to stay on my neurological medications and I would need to be seen for my migraines. he said that he believes that my illness is rheumatology related and they believe that I do have an auto immune disease. he said that he thought that it was hiding at the time of my appointment. he said that he was not going to use the word dormant because they did see things in my symptoms and in my blood work. he assured me that this happens often and he said that this is why we hear of people going to dr to dr for years and years and then one day all of a sudden a doctor finds something. he said its usually not the doctors....he said that it is usually because there is a new symptom or something shows up in the blood work that wasn't there before. he said that he would not be surprised if in 2 months or even 2 years if they found out I had lupus...which has been put on and off the table for many years now.
What my question is.....what really are the chances of me having lupus if my ana has been normal for years? they said that they would suspect lupus because my rheumatoid factor has been so high...if my ana was abnormal...but its not. he said that this could stay "hidden" for years and maybe go away or that it may "rear its ugly head" one day and we would find out whats going on.....but is there a chance that this is lupus or is it not lupus cause my ana is normal???? is there a chance that this is still lupus?????
Dear My Girls - My ANA is negative, as well, but I, too, have had almost every symptom outlined in the Lupus Checklist over the last 10 years. I have been diagnosed with R/A, P/A (apparently rare to have both, who knows!?) - the R/A diagnosis came WITHOUT a positive RH Factor test; fibromyalgia, lichen sclerosus, celiac, etc...... and on and on. I have learned here that you can have a negative ANA and still have Lupus. The closest I have gotten to the Rheumy actually giving the Lupus diagnosis was starting Plaquenil ... He said it is for R/A and Lupus... I have excessive protein in urine, too, so continue to have Lupusy things going on.... The wonderful people on this site are my security blanket as there seems to be no rhyme or reason as to why I test negative or positive for some things when my symptoms say otherwise. Do you have a good Rheumatologist? Are the meds helping you?
And I have to ask you this (forgive me), you mentioned your teeth .... I am seeing the Opthalmologist next week due to starting the Plaquenil, dry eyes (contacts stick to my eyes no matter how moist when I put them in and have to be scraped off - tried different contacts to no avail) ... My teeth have been disintegrating for the last 10 years ... dentist said he does not know what is going on but that between the gums receding and teeth being pulled, I will definitely need dentures in next couple of years. Is this what is happening to you? I never put the two of them together. Sorry for butting in with a question of my own ... but, like I said, you are the first person I have seen mention "teeth" .. Hugs to you and if I can help in any way, please let me know. Dee
RA is also a nasty immunologic disease I have severe lupus but my RF has never been positive and my ANA has been negative for years.- but I do have severe joint damage in multiple joints. I also have spurs on my spine and bone deformities in my feet- spine is from aging, feet are from gout. Incontinence in older women is common and again part of aging. Much of my joint problems are the result of long term medications and aging. It becomes difficult as you grow older with the ravages of a chronic illness as well. Not sure why it would be important to have lupus also- you have enough problems! Treatment for both can be very similar. Hoping you can get some relief no matter what your dx is on paper.
Poobie: Thank you (I am going to take your reply to heart, as well). I, too, have spinal deformities from RA or PA or both as well as joint damage in hands, wrists, feet, knees, etc., and most days get around like the tin man :). Am fighting against the potential Lupus diagnosis more than anything. I guess it is just "wanting to know" more than anything. Good news is I just got off the phone with the Lab who could not give reading of my latest 24 hour urine test - Technician said because it was too LOW!! Hooty Hoo! I know it can fluctuate, I think, but this is definitely reason for celebrating in my book :). Hugs, Dee
I also lost my teeth as a result of dry mouth- however my dry mouth was caused by medications I also occasionally have salivary stones due again to dry mouth but again this is a side effect of medications I have used oil of primrose to help with the dry mouth
You could still have Lupus. I have had symptoms all my life hit or miss. My teeth have always been a weak point for me, and I was very embarrassed by them and got dentures in 2010, and then was diagnosed with Lupus in 2012. I don't experience dry mouth or dry eyes, so I believe its just part of the lupus.
I have sort of the opposite going on now. My new rheumy said that if it wasn't for my old rheumy's lab results showing positive ANAs and other markers along with my previous symptoms, he would not even consider lupus. Now, I'm no where. Still have joint pain, but it isn't the inflammatory type. My joints do not swell, they just hurt. I have dry eyes, sores along my lips, can't talk long without getting hoarse. I had fairly nasty Raynaulds, but my hypertension med helped tremendously. I also had major fatigue and these horrible cysts along my chin and mouth area. So many more symptoms. When my old rheumy diagnosed me with lupus, she put me on plaquenil. My symptoms reduced markedly.
He did find areas along my spine that have degenerated and have bone spurs which probably is the reason for back pain. But no answers for fatigue, continuing joint pain, general malaise, etc. I really like this new rheumy, but my life has become a little more out of control because of this. He is slowly changing my meds as well. And, he is thinking of taking me off plaquenil. Maybe a full blown flare will get him to see something to help diagnosis? At this point, it feels worth it.
If i prepare for it, house uber clean, dinners in freezer, bills paid, I can deal. : )
The RA factor is one thing, but I can definitively answer on the ANA question. Of the 3-5% of the population that have lupus, 1% of those will never be ANA positive. This makes it incredibly difficult to diagnose and usually requires a biopsy. If those I are negative I am not certain what they would do after that.
I do hope you get answers soon, and truly hope it's not lupus.