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...

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Jen75 07/05/2017

I'm a new member, female, almost 42 and living in Toronto, Canada.

I have been reading a lot of the postings on this board and wanted to say "Hello" to everyone. I see a rheumatologist on August 2nd and have been waiting since beginning of May when my ANA and anti-RNP came back positive.

I have had quite a few strange symptoms in the last year and a half and it is not the first time that they have happened, I've had a few years in my 20s when things just popped up and disappeared without any answers from the doctors.

Following has occured sine Jan 2016:

-migraine headache which I though was a stroke since it went down my right hand

-vertigo for about a month

-pain on lower left side, my doctor said it was constipation after doing a colorectal cancer test & checking out ovaries and other organs

-breast pain, it felt like when I was brest feeding and my boob would be full of milk, ultrasound showed nothing

-little red dots on my body, blushing, night sweats (I thought it was early menapause)

-dental cleaning in April led to a gum abscess, then 3 days of extremely dry mouth, hardly and saliva, followed by a feeling of something stuck in my throat, then penicillin reaction, the amoxicillin which did not help but gave a rash on my arms at the end, unbelievable tiredness for a few days, weird feeling in hands & up my arms

-I'm currently dealing with a dry throat that just won't go away, it is good in the morning when I wake up but gets bad at night and my body hurts all over, I've had that for years and have just learned to ignore it, also tired all the time and my bed time is the same as my son's

-also I drop things, like plates and glasses when I'm washing them, or pickle jars

I have a 51/2 year old boy and from what I've been reading things do pop up after pregnancy.

I've been reading a lot about research and about drugs like Lupuzor that are in testing stages so I'm hopeful that I can manage this and see my little guy grow up.

Thank you!

Jen

MToennis 07/06/2017

Sounds so familiar! Things popping up and going away. That is my whole life right there! Welcome to our group!
Mary Ann

Katalyzt 07/07/2017

Some of those symptoms sound incredibly familiar, and we talk about them here, but rarely see them mentioned in medical literature. (Dropping things, for example. With you on that! Also it is weird that... my headaches always start on the left side, my blood clot was in my left leg, my left ear is the one with tinnitus, left glands on my neck are swollen more often than the right.)

Dry throat, check. Also periods with too much saliva, drooling at night.

Endless dental problems, check.

Vertigo? Never had that, don't hear about it much here, but yeah, possible. Never had pain on the lower left side...

And this is where it gets confusing: Some symptoms are NOT MCTD. They might be something else, or nothing at all.

With this illness, I kind of cling to the things I do know more or less for sure, because there are very few of them! I've gotten better at learning to live with ambiguity, but that part of it can be very frustrating.

Others,

hearthappy2017 07/08/2017

I'm 54 and was diagnosed in December with MCTD - positive ANA and RNP as well. I have rejected Plaquenil and other similar drugs. I have many odd symptoms - almost makes you feel crazy. My tailbone is extremely sore, my legs and arms tingle like they are falling asleep all the time and I have quite a bit of nerve pain in my body. I live in Nashville but I'm going to Mayo Clinic in August for a second opinion to discuss better treatment plan. I've tried paleo autoimmune diet for 3 months but didn't see remission. I will let you know what I learn.

Katalyzt 07/18/2017

Katalyzt here, 59, also rejected paquenil and others, could be a good idea to hold off on those at this time. If you;re having lung problems, that's a different story. Again, I think CBD in the morning, opiods in low doses for the evenings, that's the way to go. Walk, socialize, work as much as you can.

It's like we used to say when we smoked weed: "Try to act normal." If it doesn't work, don't beat yourself up about it, but when it does work, it feels great.

beth2day 07/24/2017

I am 53 and was diagnosed with MCTD in 2013. This is the second support group that I belong to. I am finding more conversations here that do relate to our disease. I have found this disease to be very unpredictable. Just when you think you get something under control...something else pops up. I have been very blessed because I did find my 2nd RA doctor was more understanding and knowledgeable of the disease and helped me.

Symptoms over the years:
1. yes, dropping things, still do
2. Raynauld's came and went in the beginning
3. Left and right hip pain, most of joint/muscle pain on left side
4. year and 1/2 of severe muscle pain in both arms
5. Extreme fatigue
6. hands, fingers, feet and leg cramps
7. little red dots everywhere and rashes if I spend more than a few hours in the sun
8. Dentist says my teeth are loose even though there is zero gum disease.
9. Recently, Lung doc says lung nodules, scaring, and opacities are more than likely from aspirating. 2 months worth of tests with an awesome GI doctor found esophagus pretty much closed and stomach doesn't empty til 3-4th hour.
10. Problems with lower GI that cause mal-absorption or food dumping, that most doctor's sum up as IBS.

Went through the long list of anti-inflammatory drugs, nerve medication, steroids, but no major pain meds. Have taken plaquinel from the beginning and
since October 2016 I take methotrexate. Started injections at home due to less GI irritation. I am doing very well and have very little side affects. The hardest part is trying to stay on an exercise regiment or catch up on work projects at home, only to find that your shoulder, knee, back, etc. stop working for a few days.

Keep reading and researching and you will figure out your best path. Groups like this definitely help. :)

Jen75 08/14/2017

Thank you all for your responses. Really helps!!
I went to see the rheumy on August 2nd and to be honest I'm really confused. I saw her assistant first and she kept asking me if I was stressed. I kept telling her all the weird things that keep happening especially in the last year and a half but did not feel like I was being taken seriously. Then the rheumy came in and said I had something in my blood but no clinical signs, but I wasn't even examined by her. I went to see my family doctor a few days later because I was so confused and she made more sense and said they really don't know much about these type of diseases and it might take time to see how things progress if they progress at all. I'm starting to feel pins & needles in my legs & hands, my right thumb started hurting the day before I went to see the rheumy, it's hurting more now and it is starting to hurt under my nail as well. My throat continues to bug me, rheumy said my doctor should do an ultra sound. I have been prescribed no meds other than magnesium. Scheduled to go back and see rheumy on December 18. I'm scared to go back to the dentist, I'm scheduled for a cleaning on the 24th but that's where it all stared 4 months ago and not sure if I want to keep the appointment. If anyone is visiting Toronto or lives in it or close by please let me know, would love to meet for some coffee. I keep drinking it, hear it has antioxidants. :)

undefined2017 08/21/2017

I also had those odd symptoms, especially the breast pain - strange flashing pains in the breast and nipple and a lot of fibrous tissue in the breasts pre-period that went away post-period. I am also in my mind 40's and perimenopausal. My symptom diary seems to show flares after my period (when estrogen is rising) and a calming before (when progesterone is rising). I have found some research that links higher estrogen levels to lupus flares (in people with systemic lupus), and for instance if you have SLE they won't let you do estrogen/HRT after menopause. I talked to my OB/GYN a while back (pre- my AI issues) about going on a progesterone supplement. I asked my rhuematologist if this is something that I should pursue or at least if she thought is could be any harm. She said said to try it, she didn't think it could hurt. You may want to check with your GYN about the breast symptoms.
I also had the issues in the left side, numbness, pain the arm, dizziness and even facial/muscular twitches. I was new to Plaquanil and thought it may be that, so I backed off it for a week with dr's approval and then started to ramp back up over a month-time to the desired dose. So far I have had no issues (knock wood).
Good luck. Again, so glad to have found this forum where I can post all this stuff and not have people think I'm nuts.

hillsandvalleys 08/21/2017

Welcome Jen75,

I hope that you are getting a better handle on the wacky nature of MCTD... I'm fairly new to this world myself and seem to learn something new overtime I visit this group board. The random night sweats are one thing that I hadn't associated with MCTD but now I can add that to the list of odd symptoms of this insidious disease. I am one of the lucky ones, as Plaquenil has seemed to put me in a state of remission ... hope it will last for decades!

If your blood tests came back positive for the immune response to RNP (anti-RNP) then I think (maybe someone with more knowledge can correct me...?) there is no question of the diagnosis ... MCTD it is... and the sooner you start addressing the rouge autoimmune responses the better... and the more fun it will be to chase after your little one!

I have an excellent Rheumatologist who I think might do consults with other MDs ...PM me if you would like her contact information.

All the best.

BeccaW 09/18/2017

I don't want to burst your bubble, but I had to be taken off Plaquenil after 4 years. It was turning my skin grey. Hopefully you will not have that issue. I am on Methotrexate now, supposed to do an injection once a week. I've had some issues with that as well. I'm not as bad as I was when I was first diagnosed 4 years ago, so I try to only take the meds once a month now. My doctor is not aware of my choice to lower the meds as she would probably suggest otherwise. I think you need to pay attention to your body. No one is ever going to know it like you do. My regular doctor told me I was getting old and had too many kids and that was why I was having all the MCTD symptoms (I was 32 at the time). Took my hands turning purple in his office for him to finally test me. I see an amazing Rheumatologist now, and she helps me understand all the strange symptoms of this disease. I think that's the hardest part, not knowing what it will do, or when. Just pay attention to your body and find yourself a doctor who knows this disease.

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