Hello everyone. I am Laura. I am 44 years old. I was diagnosed with "overlap syndrome, " or undifferentiated connective tissue disorder. I don’t know if it is exactly the same as MCTD, but I seem to have the same symptoms that many members have. Right now I seem to be in remission. I just want to have contact with people that understand my condition.
I’m a mom of a 15-yr-old daughter with MCTD diagnosed 2 years ago. Her main symptom is RA. She does a combination of therapies: Enbrel, MTX, plaquinil, naproxen. We also work extensively with a holistic doctor integrating nutrition and natural medicines. Currently we’re looking into low-dose naltrexone (http://www.ldninfo.org/). Does anyone out there have experience with LDN?
I have MCTD
My 27 year old daughter has been diagnosed with MCTD
My name is Michelle, I am 46 y/o, I was diagnosed with MCTD, Lupus, Fibro, and I suffer daily with pain as my list grows all the time… I love alll new informormarion… I am always reading and searching the net even though I know there isn’t a cure but I have hope to someday find relisf…
Thank you,
Michelle
Hello everyone, my name is Shelley. I am the mother of 2 wonderful children, my oldest child Kayla is 13 and was recently diagnosed with MCTD by several ped. rheumys and a ped. specialist. We live in FL. and Kayla is being treated at Shands Childrens Medical Center. Our goal in joining the group is to met other who are dealing with this and other autoimmune disorders and gain strength and hope for a Kayla’s future with this painful disease. Looking foward to hearing from you all.
Shelley
My only child was diagnosed 2 years ago along with Raynauds, Myosits and Rheumatoid Arthritis and although he is an adult he is still have great difficulty dealing with the pain and all the meds!!
Hi, I am interested in this topic because my daughter has this disease and we are always looking for the latest treatment and advances in this disease. Wilma
I have MCTD. I want to learn how others are coping withe the disease, new treatment options, and to share similar experiences.
Why am I interested… tested twice positive for RNP antibodies, which to my understanding is a marker for MCTD. I was just diagnosed with UCTD (undifferentiated).
What I want to learn… Word-of-mouth advice, how to combat the fatigue.
Who I want to connect with… Those who truly understand.
I have MCTD, Fibromyalgia, and chronic fatigue. It’s frustrating to always feel bad, and not have the energy to do what you want and need to do.
Hi
I was diagnosed with FMD last year. I think I also have fibromyalgia. I hurt all over all the time. Doctor told me, “We dont have a test for that” yea, I know. But that dont keep me from hurting.
My mother has fibromyalgia. My sister also has a connective tissue disorder, in which the ligaments on the inside of her legs are shorter than the outside, and it makes her ridgid. I am the opposite, very flexible. After talking to another woman on here and doing a little of my own research, I lean more toward the echlers danlos syndrome.
1 Like
I have had lupus (SLE and ACLE) since 1999, and it was changed to MCD in 2007 after I got CREST syndrome and hemolytic anemia.
Hello. I am a 36 year old mother of three boys, ages 1, 8, and 15. After the birth of my youngest child (2016), I began having joint pain and severe fatigue with no known etiology.
After finding a positive ANA, I was referred to a rheumatologist who tested EVERYTHING, to find only the consistently positive ANA. I was diagnosed with undifferentiated connective tissue disease, and the rheumatologist described my symptoms as “lupusy”. I was placed on prednisone for close to a year, and then on plaquenil for the last 8 months that I was on the prednisone. I found no improvement of my symptoms from the plaquenil, and would immediately flare back up on less than 10mg of prednisone, although even the 10mg didn’t put me into any sort of remission.
In March, I began seeing a new rheumatologist. She placed me on Celebrex and drew some labs. I mentioned low dose naltrexone to her, but she immediately shot it down as she believes there has not been enough research on it in treating autoimmune disease. I was, however, able to find a doctor to prescribe it to me. I started very low at 0.75mg for about 5 days, and have since been on 1.5mg for the last two days. I already notice 80% less fatigue, improved sleep, and improved mood, taking only 1.5mg.
I feel very hopeful about this medication, and have read many accounts where it “rerouted” the immune system and placed people in complete remission… to the point that the disease never returned after stopping the low dose naltrexone.
I would love to talk to some folks that currently take it and have had similar (or different) results.
Thanks for listening!
1 Like