MCTD Support Group

i just got diagnosed with MCTD and it's scary. The year before i has been tested but the rheumatologist has said it was boderline positive and sent me home. This time I guess it's real positive. Reading the information about this disease online only intensifies my fears. The symptoms i have are fatigue some muscle aches when I get up from a chair and joint pain in knees at times.  An ultrasound...

I am finally able to access the new site!! I had to upgrade soooo many programs just to be able to post anything, I was able to log in but that was all. I hope everyone is still here.

I am Carol and I am new as well.  I recently got a diagnosis of MCTD and I am in the process of trying to get my medications started.  I have really bad joint pain and tried to take Plaquinil and had an allergic reaction to it.I wonder what kind of a diet we need.  If anyone knows please let me know. I am afraid as this is a new diagnosis and I am afraid.I am glad there is a support group for...

Ok so here is my story I suffer from all over pain went to my family dr and she had me get blood work done all that came back was a postive ana ok short story ended up having lyme got treated ! Still having brain fog and pain went back to my rheumatologist had more blood work done still ana positve but lyme came back negative so that's gone. But still very tired and in pain so she put me on...

What a pain! I am finding this hard to find anything. Plus, I have had to change my password twice! And why is the type so small on the posting area but so huge on the reading area? A couple of days I could not even get on due to the upgrade. It sure will take awhile to get used to this!

I have been having lots of issues with my bladder. I keep having pain even though everything shows that the gentemyacin shot and daily macrobid pills have knocked out the infection I have had for the past 6 months. So last visit to the urologist, I had a test where the put a probe in my vagina and bladder and all around my butt. Then, they filled my bladder with water and had me stand up, cough...

I think I was misdiagnosed with overactive bladder. I was prescribed Oxybutynin, but it barely helps. My symptoms started suddenly 3 weeks ago. Do these sound familiar?There's constant pressure on my bladder,  like someone is squeezing it 24/7. I can feel tingling all the way down my urethra, which is made worse by urination. When I try to pee, sometimes 3 drops come out, even though there's...

I am so incredibly frustrated!!!   I am gong on my 7th round of antibiotics in just a few months.   I keep on testing pos. for a specific Urinary Tract Infection, called "Group B Strep".   If anyone else gets a lot of UTIs, please please please tell me how your Doctors are dealing with it.   Mine are mostly giving up as they can't understand it.  They just keep giving me antibiotics and I...

Hey! I was recently diagnosed and put on meds. Im wondering how to combat weight gain. I cant exercise like I could just 4 months ago and I dont know what to do. I got dizzy and fell over today working out at home. Ack! Any diet/ exercise suggestions would be welcome. Thanks!

New to the group.  New diagnosis of MCTD for me - I've been in PT almost solidly for 4 years... Pre/post 3 shoulder reconstructions, a knee surgery, for my wrists.It is helpful ... But with each joint and/or recovery - I end up really inflamed and sore part way through and end up with long periods where I can only exercise in pain for months.I's love to hear about others journeys.Thanks

Hello everyone! I was hospitalized a couple of months ago for symptoms none of the doctors could understand until just a few days ago I was diagnosed with MCTD. The doctors had been suspecting Lupus, but I was going through a bit of a waiting period during testing and while my rheumatologist was on vacation. The entire time I was coping well and happy, even with my symptoms. I even got on the...

Hi all,Ive been on numerous anti inflammatories over the years. My most recent one is etodolac. I went to rheum in june and all labs were okay. A week ago I went to cvs clinic for possible sinus infection and uti. My urine dipstick showed 4+ for bilirubin and I was told that etodolac can cause a false positive. Saw regular primary care doctor on wed and test again was 3+ for bilirubin. She sent...

Brand new here. I'm 62 years of age. I was first diagnosed with scleroderma in 1994 or so; oddly, no skin or hand symptoms, just a lot of systemic pain. That lasted for a few years, then went into remission and I thought, "Well, great! That's done." I stayed symptom-free for years, but about three years ago started having pain again so got myself to a rheumatologist who put me on Plaquenil and...

Okay, so I finally bit the bullet, and shelled out $300 for an appointment with a cannabis doctor her in California.This is basically one of the few totally legit doctors in my area of SoCal.  There are no Jimi Hendrix posters on the wall.  You meet with two doctors for an hour-- they are a bit more informal than most doctors, but it's all business.  They looked up MCTD, and were doing...

I feel like I have totally lost this online support group-- like most of my friends just slipped away when the website was redesigned.I'm having a really hard time right now.  I can't sleep because of the dysphagia and muscle discomfort, so I can't think straight.  I meditate, fall half asleep, gag on my own saliva, wake up.  I keep doing all the exercises and self-interventions to regulate my...