MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Hi,
I am on my second rheumy, and I really liked her at first. My first one seemed to downplay MCTD. For example, he said I might get a little itchy. Well, when I get the itchies they are intolerable and debilitating. There is no way I could leave my house. It feels like someone is sticking needles in me, sometimes all over, sometimes just my legs, or my stomach, etc.. I have actually bruised myself by rubbing and putting pressure on my skin. (I have learned that ice packs help). So I left that rheumy.
I found a new rheumy at George Washington University Hospital. She suggested I see a gastroenterologist and a neurologist (after ending up in the ER with a right arm that went numb and got very cold). I was in the hospital for a colonoscopy and upper-endoscopy on Friday, all of which I needed (they removed polyps for biopsy and confirmed several other conditions related to MCTD). I was speaking with my rheumy the other day on the phone before the hospitalization about FMLA because I am out of sick leave, and she referred to my MCTD as mild.
I want FMLA so that my employer cannot fire me. I dont think he EVER would, but I want that protection. My HR director suggested I get FMLA just to be safe.
I am the very first to admit that I am lucky compared to many people with MCTD. I can still work, I can still walk (with a limp sometimes), and I function fairly well with mostly just irritating days (one day Ill be dizzy, one day Ill be nauseous, one day my joints will hurt etc.). Every 2 weeks or so, I will have one of those days when I cant move in the morning, and Ill go to work late. I few times a month (approx. 2 to 3 days a month), Ill have one of those days with my head/face is killing and I cant wake up. My husband and I used to think I was lazy! These can happen during the weekday or weekend.
Back to FMLA: I asked my rheumy if she would complete the form for me, and she said she would to the best of her ability. As a way of background, I was first diagnosed with MCTD On February 29th, 2012 after a dermatologist noticed my Livedo Reticularis on February 24th. Since then, I have had 14 doctors visits (sometimes the same doctor), including a psychiatrist (I was already diagnosed with an anxiety disorder with panic attacks), two rheumatologists, my internist, and occupational therapist for my hands (my rheumy made this referral), and a gastroenterologist. I see the neurologist in 2 weeks, and I will soon have gum surgery (MCTD can be associated with gum disease). I saw none of these doctors by choice but because of need and three were referrals from my rheumy.
Since February 24th, I have called in sick to work 12 times usually just a few hours in the morning when I am having bad mornings and cant move. I have taken a few full days off when I am really in pain.
I received the FMLA worksheet from my rheumy today, and she indicates I made need to take 1 day off every 3 months for fatigue. Goodness, how I wish it was that infrequent.
Am I overreacting to my rheumy? What if my employer reads this and starts to suspect that I am malingering? I hate being sick and at home. I want to be at work every day. I feel like I cant trust my rheumy.
I am being a drama queen?
Thanks for any advice. (Sorry for the long post!)
Gabrielle
I am on my second rheumy, and I really liked her at first. My first one seemed to downplay MCTD. For example, he said I might get a little itchy. Well, when I get the itchies they are intolerable and debilitating. There is no way I could leave my house. It feels like someone is sticking needles in me, sometimes all over, sometimes just my legs, or my stomach, etc.. I have actually bruised myself by rubbing and putting pressure on my skin. (I have learned that ice packs help). So I left that rheumy.
I found a new rheumy at George Washington University Hospital. She suggested I see a gastroenterologist and a neurologist (after ending up in the ER with a right arm that went numb and got very cold). I was in the hospital for a colonoscopy and upper-endoscopy on Friday, all of which I needed (they removed polyps for biopsy and confirmed several other conditions related to MCTD). I was speaking with my rheumy the other day on the phone before the hospitalization about FMLA because I am out of sick leave, and she referred to my MCTD as mild.
I want FMLA so that my employer cannot fire me. I dont think he EVER would, but I want that protection. My HR director suggested I get FMLA just to be safe.
I am the very first to admit that I am lucky compared to many people with MCTD. I can still work, I can still walk (with a limp sometimes), and I function fairly well with mostly just irritating days (one day Ill be dizzy, one day Ill be nauseous, one day my joints will hurt etc.). Every 2 weeks or so, I will have one of those days when I cant move in the morning, and Ill go to work late. I few times a month (approx. 2 to 3 days a month), Ill have one of those days with my head/face is killing and I cant wake up. My husband and I used to think I was lazy! These can happen during the weekday or weekend.
Back to FMLA: I asked my rheumy if she would complete the form for me, and she said she would to the best of her ability. As a way of background, I was first diagnosed with MCTD On February 29th, 2012 after a dermatologist noticed my Livedo Reticularis on February 24th. Since then, I have had 14 doctors visits (sometimes the same doctor), including a psychiatrist (I was already diagnosed with an anxiety disorder with panic attacks), two rheumatologists, my internist, and occupational therapist for my hands (my rheumy made this referral), and a gastroenterologist. I see the neurologist in 2 weeks, and I will soon have gum surgery (MCTD can be associated with gum disease). I saw none of these doctors by choice but because of need and three were referrals from my rheumy.
Since February 24th, I have called in sick to work 12 times usually just a few hours in the morning when I am having bad mornings and cant move. I have taken a few full days off when I am really in pain.
I received the FMLA worksheet from my rheumy today, and she indicates I made need to take 1 day off every 3 months for fatigue. Goodness, how I wish it was that infrequent.
Am I overreacting to my rheumy? What if my employer reads this and starts to suspect that I am malingering? I hate being sick and at home. I want to be at work every day. I feel like I cant trust my rheumy.
I am being a drama queen?
Thanks for any advice. (Sorry for the long post!)
Gabrielle
I know many can relate to this - I only look sick when I have my rashes or my eyes swell, which is every month or two for approximately a week. I always take pictures.
For 6 years, all sorts of doctors and specialists told me it was all in my head - every symptom. I may be projecting that onto my rheumy. Maybe I have developed a lack of trust in doctors. If you do the math, she has allowed me 4 days of sick leave per year for MCTD and Raynauds (I have Livedo Reticularis too, but t only makes me look funny thus far.). FMLA isnt leave; it simply keeps me from getting fired or replaced. I love my job, and because it is an inspector general job, I would never play sick. I would never do that for any job.
It has been a bad week. I was in the hospital for some MCTD-related procedures on Friday after a 2-day liquid diet for the procedures. Then I got severe MCTD headaches (Does anyone else get these?) Sunday and Monday, but I could not take my pain relief medicine because it may cause bleeding due to the procedures. One surprise was the removal of several polyps for biopsy.
Sorry for venting. I am getting too worked up. Thanks for listening. I rarely feel sorry for myself because so many people have it so much worse than me. I recognize that and always think of my good fortune. Literally every day.
My best wishes to each of you!
Gabrielle
What I did was made a list of every symptom with a description of it on its worst day. When I was done I had a 2 page list. The list took me several days of pondering to catch all sporadic symptoms. Don't leave out the little stuff that is only irritating.
I was already working only a few hours by the time I was diagnosed. Six months later I quit working altogether. Many times the Dr is not putting the specific info of your case into a big picture. Document all of the days and hours missed from work and the reason for each. Some will be procedures and others will be from inability. If she has the numbers in front of her for the 3 months between visits to her, she can do a more thorough job for your FMLA app.
If she refuses to see your full condition with these two pieces of documentation, then she is not the Dr. for you. I have been fighting for my disability for over two years already and the lack of big picture and force in my med records was a big contributor to that delay. Your FMLA is just as important for different reasons. Make sure they get it right. Make sure she also puts in your prognosis as not likely to improve. The powers that be need to know that you are in this for the long term.
Good luck and keep us posted.
Hope this helps
Robert"
Seriously. I feel like I Am working to pay for my medical bills and no one knows what to do with me.... I don't think they really know what to do with us.. I called Mayo clinic... Has anyone else tried that. The. Nurse I work with told me I. Need to go there... So confusing
~allie
Thanks and have a great day,
Gabrielle