need some info. PLS!!!!!

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groovygeishagirl
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/7/2013 6:03 AM (GMT -6)   
shakehead

Hi everyone. I am new to the forum and am a little nervous about telling my story. I was dx with MCTD in 2005 by my dermatologistas I had so many open lesions, malar rashes joint pain, was So TIRED all the time I could barely walk around,had severe sores in my mouth and nose as well as the start of the butterfly rash which was confused with rosacea for about 15 years. I still have the same dermatologist who still believes I have MCTD but my ana is STILL negative!!! I have a really hard time with house work, I have to stop every 15 minutes or I get over heated[since my dx I always have a fever all the time, as well as severe headaches[Ihave had migraines since my early teens and I was warned that my headaches would get worse with this dx.] I can't even make my bed without severe back and shoulder pain and have to actually stop and sit on the bed with the cat halfway thru the process.depression and anxiety have also followed me, however I had these 2 diseases prior to dx and they got a bit worse especially the depression. I hardly sleep at nite b/c of my pain and discomfort and am only on plaquenil 200mg twice a day for this stupid disease, but it only helps my skin problems.I also can no longer multi-task[ I could do 5 things at once, and quickly, at my job]for as long as I could remember. I have the "lupus fog" a lot of the time,which drives me crazy!!!
I no longer can drive and had to give up my car and license as well as my nursing license which I still cry about today as I miss my staff and pt's sooo very much. I lost all my friends as they thought my disease was ?! catching, and these were nurses for god's sake. I live alone as my husband left me as soon as he found out I was ill, so I have been on my own since dx. My family do not believe anything is wrong with me, and it is all in my head, and I have spent much money and time with psychologists off and on for the past 15 years.I really have no support system,which is really sad when u think about it.
none the less, I was at the dermatologist's last week who thought my disease may be progressing, and I tell him every year that I feel a little worse,but I can still do almost all things for myself. my parent's drive me to appt's and have been told face to face with dr's that I have this disease, but my mom especially ,jusst thinks that I am lazy and a VERY POOR HOUSEKEEPER!!! and ashe always comes to my condo and tells me to get out of bed etc and drives me crazy!!I am an adult and a child at the same time. even my sister doesn't believe that I am that ill and is very jealous of the fact that my dad helps me a lot with errands and gives me taxi vouchers so I can do things on my own. I haven't been to a mall since dx or to the movies as the noise is overwhelming! also I grew up at our cottage sincee I was 3 every summer and now, can't even go as the hot weather makes me really ill. I am probably the only gal who could stand outside my condo in a bikini in the middle of winter and feel great!!!I love winter for the great amt of cold and snow as I feel a bit better in this season.Sorry that I am all over the place with my writing, and have a very hard time keeping on subject, but I was told by my neuropsychologist that this is also part of the disease process with thee neurons in the brain.
My concern is this, I was sent to see a rheumatologist that I have seen before, today , for severe joint pain and I felt and saw joint swelling in my knees, legs, and my hips are so sore, and I am 5"9 and weigh 115pounds, and cannot even find a spot to sleep that doesn't hurt my hips. anyway this dr. did not even do an exam, she just looked at my legs, and said there's no swelling and your blood work was all - for mctd, so u have fibromyalgia and when u are depressed and anxious, and have sleep issues, you have more pain.then she stated - u do not have this mctd, so forget about it, go back to your dr., get him to change your antidepressants and antianxiety meds, see a psychiatrist, and get a consult to the pain clinic for some medicinal marijuana instead of the gabapentin that I take now.well being an ex nurse it is VERY HARD for me NOT to argue with a dr. especially today with this one, and I have seen so many specialists that I have given up hope that they listen to me, as they are out of the office before I can ask anything as they say nurses just are to lazy to work and say they are burnt out, to obtain disability benefits.now, come on, I have extreme pain , alopecia aereota, have lost all my hair 4 times, complex regional pain syndrome, all which are all related to autoimmune diseases, and seen more in women than men. I need to know, does anyone out there know if fibromyalgia and mctd have overlaping symptoms???I came home today and was so depressed i spent an hour eating junk food. I never eat, I am never hungry and ever FORGET to eat, as nothing tastes good!
I really need some answers and am tired of 1 dr. saying one thing and another saying another, maybe I am crazy, and it IS ALL IN MY HEAD!!!!can anyone help with my question. I would rrealy appreciate any and all comments.
tired all the time!!!!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/7/2013 11:06 AM (GMT -6)   
Have you read much about MCTD? Here is a good website www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675

As you will read there, you should be treated with corticosteroids and immune-suppressants as well as the Plaquenil. I don' think MCTD is something that should be primarily treated by dermatologists - it's an auto-immune disease they don't have specific training in that area. I don't even think they are the right person to diagnosis it!

My suggestion would be to find another rheumotologist for a second opinion. You need a rheumy who is interested in treating auto-immune diseases. One way to find one is to check out www.lupus.org and look for your local chapter. Then contact that chapter to see what local rheumies are on their advisory board & active in your area. Get in to see one of these Drs for a full workup. They are the main Drs for auto-immune diseases and also for fibromyalgia.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

groovygeishagirl
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/8/2013 7:04 PM (GMT -6)   
Hi lynn,
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!!!!

bonzi
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 7/23/2014 2:56 PM (GMT -6)   
WoW, I have tested positive for MCTD. I have none of the symptoms you shared. However, I do have two very close friends/relatives with Fibromyalsia and they do suffer from some of the symptoms you listed. Second opinions are good.

Currently tho, I am experiencing the most lengthy 'flare up' I have had so far and the itching is about to drive me crazy. Does anyone else experience such horrific itching with their 'flare ups' and if so, what is the remedy. Please advise.
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