Posted 6/7/2014 10:46 AM (GMT -6)
I've been lurking for a while trying to figure out if my diagnosis from my rhuematologist is correct. Any input would be appreciated. I have been feeling unwell for about 2 years now. More than my normal fibromyalgia. Excessive fatigue and joint and muscle pain. I have hair loss and recently my bottom lip has become chronically swollen. In Sept 2012 I developed and enlarged submandibular gland and what was diagnosed as Sjogren's but lip biopsy was negative for Sjogen's but showed "mild chronic inflamation".
My recent bloodwork shows ANA 1:640 Nucleolar - It has been 1:320 Nucleolar since October 2012 other lupus tests normal.
I am anemic and have been since June 2011, no vitamins or iron supplements can get red counts in the correct range. Not terrible but never in correct range.
C3 has been low on two previous occassions but is currently in the normal range
White count currently normal but was low on one previous occassion
ESR always normal
C Reactive protein currently normal but was at .8 on one previous occassion
I have terrible memory, concentration and depression problems that have been diagnosed by neuropsychiatric testing
I have raynauds that is reactive to cold but also to stress also intermittent swelling of hands and feet
I had been suffering with terrible leg pains that neurologist said was a rheumatology issue and rheumatologist has diagnosed as hip bursitis.
At my most recent visit the rheum gave me a medrol pack which helped me a great deal. I was even able to breathe better. I had complained of lack of air but it was diagnosed as anxiety. Now rheum says it is most likely chest wall swelling.
Since the medrol helped so much the rheumy said it is lupus and put me on plaquenil 200mg twice per day. I have been on it for a month and I think it may be helping some. I don't think I am quite as exhausted and the bursitis and joint and muscle pains are not as extreme. My PCP said steroids would always make you feel better and help but she does not think it's lupus or fibro but something else but she doesn't know what. I also have gastritis, diverticulosis, IBS, a moderate hyatal hernia and moderate osteoarthritis in my thoracic spine.
I have also been suffereing from more headaches than my usual migraines and recently there have been white matter hyperintensities noted on my brain mri that were not there in any previous mri but neuro thinks they are due to migraines. In addition to more headaches and migraines I have had a few episodes of swelling of the lymph node on the back of my head on the same side that the sub-mandibular gland is enlarged. Both glands reduced in size with the steroid. Oh and also have seen an ear specialist for chronic sharp ear pain on that side but they can't find anything wrong in the ear.
I am 49 years old and feel like I have seriously started to fall apart over the last 2-3 years and I have gained 30 pounds in that time also:( I used to be able to walk 3 miles daily, now I can't even work every day.
Any thoughts would be appreciated.