I am a 23 year old female, and have recently been diagnosed with MCTD.
After several years of doctor's not taking my symptoms seriously, I have finally been diagnosed with MCTD about a month ago. A couple years ago, I woke up with severe joint pain, could not get myself out of bed, couldn't sleep, had a lack of apetite, and lost nearly 30 lbs within a month. I made multiple visits to many doctors, and doctors were concluding that it was probably a viral infection or stress. I was prescribed sleeping pills to help me sleep, and was told that it would go away.
Three years later, the same thing happened. However, it was worse! I could not get myself out of bed, and needed assistance to go to the bathroom. Climbing a set of stairs was impossible and I was in pain everywhere. I finally met a doctor who had gone through the same events I did, and actually believed my symptoms. Whenever I explained to Doctors that I had pain everywhere, they would give me the look as if I was lying, or making stuff up. So when I met this Doctor, it was quite a relief and I finally had faith that I could get better.
The Diagnosing period was pretty tough for me as I thought I had RA - Rheumatoid Arthritis, and then thought I had Lupus, and now have been officially diagnosed with MCTD. I have been currently prescribed with Methotrexate injections of 25 mg once every week, which I have to self-inject myself with. Although, I have a lot of family that can inject me, I would like to do it on my own as I do not want to feel dependent on someone else. My doctor has also prescribed me with hydroxychloroquine which I am taking as well. I've also been given folic acid supplements to take three times a week. My side effects do not get bad till the 36 - 48 hour mark after the injection.
I am here on this page, as I do not know what to expect from this disease. I have quit drinking, and find it very uncomfortable to explain to people as to why I do not want to drink or cannot drink. Being 23, I used to be dependent on alcohol to have fun at social events. I went to my first social event this past weekend, and did not drink. It wasn't that bad, but it definitely a lifestyle change that I need to embrace and adapt to.
The most important reason why I am here on this page, is that I am scared! I do not know what to expect, and after several google searches, I see people indicating that if you get treated right away you are for sure given a minimum of 10 years. I am confused. I am young, I want to live, and build a family and grow old with my partner, when I get one. I do not know what to expect, and I do not want to seem as the sick one in my family. I do not like being identified with a disease, because I don't want people to pity me. I need a support group that doesn't identify me as being different, and being diseased. Hence the reason why I joined this support group.
I apologize in advance for this long essay. However, I will be there for all of you and I would like to take you on my journey as my family in fighting or coping with MCTD. I thank you all in advance for your support, love and kindness. <3
Scoring a 71 with normal being less than 20 units.71 is a moderate to strong positive, 80 is strong.Tricky test to read, will explain later.
Well, my hair is again falling out. I had some success in keeping it while on Plaquenil and Medrol. I have been off of them for awhile, but on tons of vitamins up until a few months ago when I developed the poikiloderma and they had me go off all my OTC meds. I went back on the vitamin D lately since I was starting to hurt all over. This morning, I woke up to generalized pain. It has been...