Posted 11/8/2013 5:04 PM (GMT -7)
have seen another rheumatologist upon initial dx in 05, and he do do an hour's worth of tests testing joints ligaments rom's to all limbs and joints ,checked me lying and sitting down tested me with balance issues.He also did a very thourough hx before examination as well, and of course bld work. well bld work came back negative for mctd, however,he did not dismiss it completely,nor did he think I had fibromyalgia.I saw my neurologist about 2 months ago as when they did an mri to rule out ms they found a circular formation filled with spinal fld, in the rt. parieital area, andd it was statedd that upon presentation, the radiologist stated that I had had an old infarct, most probably in utero , which was why no major s&s were noted. however when I saw the neruologist this time to f/u with this cyst, the 2nd mri showed a bit of enlargement but, no drastic change.according to my neurologist, after reading ALL the 2 books of Dr's notes I have, [when we had to fight to get disability benefits from our gov. here], he also notedd the neruopsychologist's notes, that my tests confirmed a very distinct change with various tasks and tests ,oral and via computer, and that the type of depression and anxiety I have has changed and is not a "normal " type of depression but on that has a distinct pattern and is seen 50%-75% in pt's with a dx of sle and is organic in nature. upon futher research this Dr. stated that is was seen that other pt's with very similar results from all testing, the incidence of sle was a probable dx, but as a psychologist, he could not dx the disease, only confirm that his findings were consistent with this dx.
I really do not want to waste anyone's time in this forum, and have read the mayo info. as well as the arthritis society's info. on mctd as well as many reports by rheumatoloists who think this is not even a true disease and this is what I am up against.
also upon research of a possible overlap of s&s with mctd/sle/fibromyalgia/ both alopecia aeorota and this new dx of complex regional pain syndrome are both seen in high numbers of pt's with mctd and aree seen in correlation with autoimmune diseases.
The dx of fibromyalgia does not explain my photo-sensitivity, hair loss,anemia, excess wt loss, severer migraine h/a than I have ever had, nor any of my malar rashes on my back, which I have many scars from, not the 50+ lesions I had that were red open and oozing upon dx and when I saw the dermatologist. this is why I was put on plaquenil, to see if the lesions in my mouth nose and all over my body, would respond to the drug.now it presents to me that b/c plaquenil is used as a drug for mctd skin issues, if the drug were taken, and no effect was seen of the skin lesions, then it could be surmmized that, I did not have mctd. the dermatologist could not believe the improvement in all of my lesions and the horrible malar rash with extensive scabs all over my back. now these lesions have changed to vitalogo lesions and do flare up and enlargen when I do too much or have too much stress. also I sleep 16-20 hrs when I have a "flare"??! and joint pain is severe, so that it is hard to walk at times.so to tell u the truth I am quite distressed and confused about this last appt with the rhem. as she basically wrote me off and my appt did not last more than 10 min.I do experience "the lupus fog" quite severely so this bothers me as well. much bld work has been done since 05' and every year I feel worse. I know as a nurse, we have too much knowledge and many people think we have every disease in the book, however, this is not the case, with former collegues.is this an overlap, am I crazy? or what??
we have no local chapters of lupus organizations in manitoba, or an any province, other than in chatanm ontario, but that is in dire need of funds, or it will close. many people go to your lupus of america chapters for information on mctd as well as sle. I am truly sorry for all of this, it sounds like I am writing a dissertation, however, I feel truly alone in all this and do not know now where to turn.
thx for the reply anyway,S.
tired all the time!!!!