Undifferentiated Connective Tissue Disorder

If you can get another opinion from a rheumatologist it
may be time to start over for confirmation and medication.

I am kind of in same boat but I am on Plaquinil for both because also have OLP. It has helped with both but took 6 months. Eye exams every 6 months as well. Celebrex too. Can’t walk without it. Try something find a new Dr.

@austintx Welcome to Mayo Clinic Connect! This is a public forum where those with a medical condition can share their experiences with those who are newly diagnosed and help to answer questions, but not give medical advice. That said, I would agree to a 2nd opinion. Insurance should pay for a 2nd opinion as it is legally your right to have one. What I would also say is that you might want to start a pain journal so that you have real data to show another doctor or your own. Use the standard pain scale of 1=no Pain and 10=major pain. Did the pain come on slowly throughout the day or did some event bring it on? What calms the pain down, a heating pad or an ice pack? Does pain keep you awake at night or from doing things that you like? Does it get in the way of a normal day?
You can probably find examples of pain scales in health related books in the library.

Thank you all!! I’ll get a 2nd opinion.

Same boat re pain, and have been to specialists, including ortho and rtheuma, and was prescribed Cellcept, Methrotrexate, etc BUT after checking the black box warnings, decided not to risk it. IMO, everyone should advocate for themselves and check online for the blackbox warnings. They are not foolproof and every decision is based on benefit/risk. You are not necessarily missing out on anything. Your doctor sounds conservative, which may be in your best interest- every single pill/potion, etc carries risk. You have to decide what's worth it to you. Drugs have harmed me and caused multiple drug induced issues. I have had numerous life changing surgeries- bilateral hips, bilateral knees over 25 years- and now am told I need bilateral reverse shoulders and more importantly - cervical surgery- but I am holding off, realizing the older I get the more diffixult it may be to rehab- or more serious issues may arise prohibiting me from even getting those surgeries. I also know those surgeries will be tough and make my life hell for months or more. So I'm relying on PMA, wise diet and exercise as long as I can. This is not medical advise- just my personal experience. If you think in your best interest, seek out a 2nd or more opinions until you are comfortable with the professional opinions. Good luck!

I second the second opinion … But - if you’ve been diagnosed with UCTD, all that means is that you have symptoms of an autoimmune disease that don’t neatly fall into any particular diagnosis (but often evolves into something definite at a later date), but that doesn’t mean that your symptoms aren’t damaging your joints meanwhile. If you’re experiencing pain and stiffness - that’s your immune system attacking your joint tissue. If it’s happening frequently, I don’t see how letting that go untreated benefits you in the long term while your doctor waits to see what your UCTD turns into. It’s important to treat because often it’s not just the joints, the inflammatory process can affect the lungs, gut, and so many other things too.

Get a second opinion, and in the interim keep track of how often you’re experiencing pain or stiffness, if it’s in the morning, if it’s every day or a few times a week, and how severe it is. With your symptoms, present that information at that appt so that doctor understands the frequency which should help determine whether you need to be on treatment.

Thank you all for your suggestions!! I really appreciate it.

I was diagnosed with UDCT when I was 30. My fatigue was severe and disabling, my life changed forever. This was 1990's, they told anyone with my symptoms that I had Chronic Fatigue and I should learn how to meditate!?! I already had a 20 year practice when I became ill. I went to Hospital of Special Surgery in NYC and was told I had lupus. Flew home and my 2nd rheumatologist said, let's see what develops. I went to Stanford Medical Center and they saved my life by diagnosing cancer. But the autoimmune mystery continued.

I have said this type of thing before in these support groups: Please realize your life has beauty, mystery and meaning even while you are unable to get a medical diagnosis. These days it's much more hopeful! I can tell by people's posts there are doctors who are listening and finding treatments. I want you to know that you can try finding even one thing a day that brings you joy, it can be a very small thing. We are so much more than people with illness.

When I was 53 years old I was diagnosed with seronegative RA and started infusions. I had already lived through decades of pain and fatigue but had no ill-effects internally or externally. I continue on with the same challenges! Except I have cycles of less pain and fatigue after my every 8 week infusion. I am grateful I recreated myself from an RN in oncology/hospice to a poet/yoga therapist. Because I realized I could not/would not wait for my life to begin when I had a big old diagnosis to give me an identity!

I would rather share this part of my story with you, because I recognized the very difficult place of the Unknown.

@seniormed This situation sounds familiar. I spent 4 yrs hearing same thing. When I got another opinion (took labs) I was told PMR . Followed that Dr. and was cured.

YES, it is common. My suggestion is to listen to YOUR body. Be sure to pay attention to what you have currently changed in food, medicines and activities. Pay attention to a long used food or medications. Read any articles, especially from websites as Mayo Clinic and John Hopkin's about our conditions. Be well... enjoy your good health times. Try not to let your condition control your life.....be kind to yourself. I'm 79, been diagnosed with undetermined autoimmune condition for about 10 years.