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...
I was diagnosed with MCTD 2 months ago. I found out due to going numb on my left side ( arm/hand and left foot). I constantly felt like my limbs were falling asleep & at times it has woke me up at night. From there the dr did bloodwork which resulted in a referral to a rheumatologist. From there more specific bloodwork and of course, MCTD. I am taking plaquenil & Gabapentin. I am feeling a bit better, the unknown aches and pains are starting to subside. Growing up, I've always been told I've had an over active immune system. I've always had severe hives that were unexplained. Ive went through so many test & rounds of steroids since i was 17yrs old. Thank God, no hives since 2011!!!! But soon after, things started feeling funny in my body.
My question for you all, does anyone experience numbness or the feeling of poor circulatin in their limbs? Often throughout the day, my hands and feet become extremely cold. Sometimes they are pale, but not white like pics I've seen on the Internet. Is this Raynaud's???
I look forward to talking with the group!
My question for you all, does anyone experience numbness or the feeling of poor circulatin in their limbs? Often throughout the day, my hands and feet become extremely cold. Sometimes they are pale, but not white like pics I've seen on the Internet. Is this Raynaud's???
I look forward to talking with the group!
I had nerve pain and numbness on my left side too before I was diagnosed. At that time I was put on Neurotin ( not sure i spelled that right). The Neurotin helped but I gained ALOT of weight on it. I eventually went off of it and put up with the pain.
When I was diagnosed with MCTD I was put on Plaquenil and found that helped with the nerve pain too. My hands and feet are generally cold. Many of us have cold hands and feet. (It can lead to full blown Reynauds.)
It takes a couple of weeks to six months to get the full help from Plaquenil. I had joint pain, nerve pain, muscle stiffness, swollen fingers, dry mouth, dry eyes, cold hands and feet, and brain fog. After being on Plaquenil for two weeks my symptoms started to get better and improve. I still have the same symptoms just less severe and I will have flare ups~ like I feel like I got hit by a truck but all in all I am doing much better.
You need to have your eyes check on a regular basis because Plaquenil can cause retina damage.
I think you will find this group very friendly and helpful. It's the only place I can go where I feel like people understand me. It is very encouraging.
Just remember that there are varying degrees of MCTD. You won't necessarily have all of the symptoms or severity.
Hope this was helpful.
Terrilynne
The group is great...its so nice to have the comfort of others dealing with the same weird symptoms. Good luck and take care of yourself...if you feel like you need to rest...DO
I'm glad you found us!
Beth
I was told that my MCTD is a mild case. Funny thing, I've had aches and pains for years, but it was never debilitating. I just thought growing pains. ;) However, I'm learning that it is this disease.
I'm so glad I found this group!! ;)
Yep, I've got this too. Numbness and sometimes pins and needles in my left foot, and freezing cold feet and hands (but feet are definitely worse--they never get warm!). Like you I don't have the real white-looking fingers and toes. Mine are just a lovely purple/blue color much of the time. :)
Welcome to the group. It's such a comfort to know that there are other people who understand what you're going through and all the weird things our bodies do!
AnnMarie
i was diagnosed in 2007. i recently have started having the numbness/pain in my fingers up through my arms. it occurs at night and during the day. i don't have the extreme coldness (although i have always been told my hands and feet were cold to touch) as much but yes, all of those symptoms you described are known as Reynaud's. MCTD can be everything in the autoimmune family of diseases and nothing at the same time. I had breakouts of hives in the past and then they went away. I've been on prednisone for six years mostly to control the joint pain so i can function on a daily basis. I've been on plaquenil but was bumped up to immuran. In 2009, I started Gabapentin (generic for Neurontin) and it worked well to decrease my use of prednisone, I gained a some weight but I attributed that mostly to the pred. Then I got pregnant and had to stop my use of gabapentin. My son is two and in November I asked my doctor if we could give gabapentin another try. I started with one daily because I remember the fatigue it caused and wanted to get my body accustomed to it. When I went up to two in a day in December something happened and the combination of pred and gaba caused me to gain 30 lbs in ten weeks. I was not able to reduce my use of pred the way I was the first time. It also exaccerbated the swelling i had begun to have in my lower limbs. I've determined that this time, the same drug, is just not working...
No two people with MCTD are alike. There are commonalities. Symptoms similar but varied. Medications effect people differently. Your immune system will evolve over time. Just pay attention to your body and remember nothing is too small to bring to your doctor's attention, more than likely any unusual occurrences are connected.
MCTD is journey but you can live well with it and still smile
I have been told it is extreme tendonitits and is in need of surgery. I keep putting it off from fear, now finances.
I dont have the coldness though. The pins and needles, numbness, pain from my shoulder to my elbow, really bad in my elbow and hands, this is on both sides.
Maybe they could test you for this?
Take good care
I'm experiencing my first flare up. It's been going on for a few weeks and I've had to start taking the neurontin again bc the numbness is unbearable at times. I'm able to control the pain with Tylenol, but have Vicodin on hand if needed.
I know that each of our symptoms can differ, but Im interested in knowing How often do you have flares? How long do they last?
Just know I'm praying for you each day!
As for flares, they are different for everyone. I usually get 2 a year, but sometimes more depending on if I overdo it or not. I am slowly (10 years) learning what to do or not do.
-Kate
(My question for you all, does anyone experience numbness or the feeling of poor circulatin in their limbs? Often throughout the day, my hands and feet become extremely cold. Sometimes they are pale, but not white like pics I've seen on the Internet. Is this Raynaud's???)
Look at this to identify Raynaud's
http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon
I am starting to feel this just recently with numb fingertips and sort of hardness under fingertip skin (like calcification).
Fresh watermelon (a full quarter) will help with circulation. I do this often and it works. I am about 60kg and a quarter works ok but hald works good.
I read that Pomegranate juice will do the same. I have not tried yet but very soon will as soon as I can find a 100% bottle.
I started looking here ...
http://www.pomwonderful.com.au
Anyway, it is pretty scary at first...and often hard to know what hurts from what. But hang in there...the group has wonderful ideas!
Nancy