I'm a human puzzle looking for answers

@seniormed thank you! Yes I regularly take photos of my skin issues so at my visits I can show proof of what I'm experiencing. That's what really lit the fire & prompted my PCP to refer me out to several different specialist. I have a neurologist appt this month and will be taking my diary & photos with me to help me better explain. I'm in the process of getting referral for a different rheumatologist..and at my visit with PCP at end of month I will be asking for routine labs to be drawn how ever often he feels is necessary to watch these markers. Thanks so much for your feedback.

@pm56 thank you! I believe I have but will double check. I also have researched dermatomyositis and a lot of that fits. So many different ones I seem to have a little from each. That's why I feel so positive about Mixed Connective Tissue Disease (MCTD). Thank you for your feedback I appreciate it

@fedupintexas I have so many symptoms that my chart reads: dermatomyositis (I’m Tif-1 positive), RA (even though I don’t have a positive CCP but my RF is 80), Psoriatic Arthritis (as my big joints and muscles hurt), NR-Axial Spondyloarthritis (I have terrible lower sacral-iliac pain) - and since I’ve developed some new neurological symptoms - tremors and hyperreflexia - I noticed UCTD “undifferentiated connective tissue disease” has been added …

I have so many different symptoms I no longer fit into any tidy box that I’m in UCTD territory! I’m kinda fed up in NY too so I feel you! Don’t give up though. Keep looking for a doctor who listens. It took 4 rheumatologists to finally find a good one. She’s no longer interested in a label. She’s just looking for a drug or combination of drugs that treats my symptoms. She fights against the insurance companies to get me what I need and thinks outside the box.

When you’re not a straightforward patient - that’s what you need: an out of the box thinker. Hope you find some answers soon.

Hi!
So sorry you are experiencing all this at a young age. I’m 67 & have been dealing with autoimmune diseases for over 30 years. I have 3. My whole family has them & it’s is harder for me to watch my 2 daughters, 37 and 41 years old, start having to deal with their emerging symptoms. What makes it all worse besides the pain & discomfort is the anxiety & fear when no one can give you an answer.
From everything I’ve been through, I would say one of the most important things is to find a good doctor that will keep digging until they find a diagnosis. It is only then that you can start treatment & get some relief physically & emotionally.
There is a wonderful Rheumatologist in Texas, closer to Dallas I think, who I have learned so much from watching her YouTube channel. Her name is Dr. Elizabeth Ortiz from Connected Rheumatology She has a good website too. She has information on how to find a good Rheumatologist & what kind of questions you should be asking.
Keep searching, even if it means firing a few doctors along the way.
It took years for me to get a diagnosis after being dismissed with “ you’re just depressed or a too busy Mom”. Finally got my Lupus diagnosis along with Hashimotos & diabetes all at age 35.
The latest is Giant Cell Arteritis (GCA/PMR). I once again, was released with no answer from 2 different ER’s, only to get so sick that my husband brought me into Mayo Clinic about an hour from where we live near Phoenix. They immediately admitted me & reassured me that they would figure out what was wrong & keep me until they do. And after 2 weeks we had an answer, GCA, a treatment plan & I’ve been home slowly recovering, feeling better. I shudder to think where I would be if Mayo wasn’t an option. But I’m sure there are good doctors in Texas; check with hospitals that are connected to Universities; teaching hospitals.
Sorry this ended up being so long but I hope it had helped a bit. Hang in there & good luck finding answers.

@pm56 thank you! Wow, I'm sorry for all your going thru as well. I can relate so much! All these new neurological episodes appear like on 2 separate occasions about 6 mths apart I experienced excruciating burning, shock like sensations only on my right side of face, jaw, throat for over 4 hrs each time! It was absolutely horrible. From my research that is a very vital piece of info I need to share with neuro. Glad you found a good doc. I'll update ya when I find my fit! I know it's coming. I won't stop til I do. Thank you again!

Do you have been given a lot of good information by the people ahead of. There is one thing I think you need to check into and that is allergies or chemicals that can cause sensitivity to them. I am talking about perfumes, dies, and other chemicals that are in laundry soap, I was told bar soap only do not use liquid. A year ago I was fighting hives and they lasted around nine months until I figured out it was a calcium citrate. A doctor told me to use.. The first ingredient was some kind of syrup something I never heard of. Nine months later, I looked into it. It was a form of grain alcohol. I am highly allergic to grain alcohol and grain. Alcohol is in a lot of products you have to do your homework.
You are fortunate to have doctors who are listening to you. When I started developing fibromyalgia, no one knew what it was, and I was not treated very nice by family, friends and medical professionals over the years. Now they know, but I still have memories.
Do your homework look things up? Sometimes the smallest or simplest thing can have a great impact in one’s life. Also food, allergies as well.
Don’t give up be stubborn and come out fighting. It’s your life
And I wish you the very best and your struggles right now

I'm sorry to hear your struggle to find answers. If you haven't had a CCP test, Early Sjogren's Panel, or a comprehensive work up for Hashimotos, those can sometimes catch things if you're seronegative for Sjogren's, RA, etc. on 'standard' tests.