Undifferentiated Connective Tissue Disease

Please add me to this group.

Add me, too…but I don’t think it is a distinct separate group from the Autoimmune Diseases group on this forum. Wish it were! And the original post is from 2018, so probably not very active…?

A while back I was misdiagnosed with mixed connective tissue disease and when I saw the black box medication the doctor wanted me to take when he wasn’t even 100% sure of the diagnosis I yelled at him and walked out. I don’t have anything that would lead him to believe that I had this but doctors do not like to admit they are wrong. I have complex regional pain syndrome. I don’t know how anyone missed this! It was so obvious that I eventually diagnosed myself and then went to a specialist to confirm it. I think they were confused because normally occurs in one hand or one foot and my began on the front of both of my thighs. I just hope everyone gets second opinions regarding a new diagnosis, especially if they happen to be going to the same type of doctor all the time to figure out what is wrong with them. I learned that the hard way! I did have a number of misdiagnoses and had doctors argue with me about it. I think we all know ourselves well enough to know when they’re telling us that we are having sudden and severe debilitating pain from depression and we have never been depressed, we really have to question what they are telling us. There are a lot of fantastic doctors out there but I really haven’t found one that cares very much about me, as a patient or a human except for my last psychiatrist who passed away.

Was your black boxed med in-the fluroquinolone grouping?? . My reaction was to Levofloxin‼️. My damaged connnective tissues, ligaments and tendons have compromised my life forever😢. My Achilles tendons, and ligaments in my legs , knees ,ankles and all toes become locked as in hard as steel ,causing absolutely no mobility, and excruciating pain. A real liability for horrific falls. I understand these are wonderful meds for those who can tolerate it but one doesn’t know their immune system WON’T tolerate the antibiotic until it’s too late. and the Ill effects are ongoing, I took this antibiotic in 2016: still having what I call levofloxin attacks. Dangerous, (no balance, so falls are always a liability) and excruciatingly painful‼️. Some bad experiences caused by connective tissue cell impairment‼️

🙏💔

I have UCTD. Luckily, I was quickly diagnosed and put on medication that has helped immensely. Yes, it would be nice to have a group for this condition. I also have FOSMN (facial onset sensory and motor neuronopathy) which is a deadly disease hard to diagnose and not included in these Mayo forums. Yet, people have gone to Mayo and have been diagnosed there with FOSMN. It's a headscratcher why they aren't recognized as conditions in this community.

@patyrod if you would like to start a discussion on FOSMN, you can do so in the Neuropathy group. On the home page of the group there is a “start a discussion” place. I think it could be very interesting!
What is the treatment for FOSMN?

Hi, my wife has UCTD but we live in Ottawa where her reumatology doctor has not suggested any meds- what is the name of the medication you were treated with?
Thank you

Hi Becky.

FOSMN is a neuronopathy like ALS, not a neuropathy.

There is no treatment for FOSMN. It is usually fatal.

Hi Solid,

It depends on the symptoms and their severity. I am taking hydroxychloroquine and am self-injecting methotrexate. They have helped immensely with my inflammatory arthritis pain and mobility. What are your wife's symptoms?