I live in Wheaton. Most of my care was from doctors in Naperville at Edward Hospital and then at Marianjoy Rehab Hospital. Dr Barr at Northwestern consulted on my case and I became a patient later on. He passed away last year and I will see Dr Ruderman annually in addition to my local doctors. I see my local rheumy every 3 months and run labs to see if everything is OK. My case is probably in remission but I have problems with meds and hope to be off all controlling meds soon.
Keep in mind that UCTD is less a diagnosis than a transitory state. It is the name given when the doctor has enough symptoms to suspect a CTD but cannot diagnose it yet. Some cases never fully develop but most morph into a more concrete diagnosis over time. Understanding AI diseases is different from understanding most other diseases. UCTD is used when a patient has a variety of symptoms indicating a connective tissue disorder but nothing can be confirmed by labs, etc. Frustrating but most of us went through a period of diagnosis uncertainty or even hell. It took about 13 months to get a positive diagnosis in my case although the doctors pretty much figured out that first I had lupus and later MCTD (lupus, scleroderma and polymyositis).
It is not that unusual for lupus, CTD, or myositis patients to not have a firm diagnosis...sometimes for months or even years. Just the nature of the disease but sometimes it is due to the inexperience of the docs. Probably not in your case. Until your symptoms develop the lab tests are probably going to be a waste. Many with lupus and other AI diseases can be very sick but have negative labs so labs are only a part of the diagnostic process. The most important are your symptoms and how you feel.
I had 2 telltale labs (mild anemia and low platelets) for at least 15 years before becoming symptomatic and was not sick, ever. My internist would monitor me with labs annually and nothing changed until 2004 when my platelets dropped even more. He sent me to a hematologist who eliminated everything over a 9 month period but speculated that I might have lupus. 2 months later I became symptomatic and my rheumy thought I had MCTD but it took about 3 more months before labs and symptoms confirmed that. My diagnosis was difficult even with a team of experienced and very dedicated docs who were talking to each other.
When you see your doctor again I would prepare a written list of questions....all of them and ask each and every one of them. When I first saw a doctor at Northwestern ( this was almost a year after getting sick) I had a list of 26 questions. He answered every one of them. It seemed that even though I had been through hell and back I had even more questions than ever. Many of which I already knew the answer but Dr Barr was a world class clinical researcher and highly knowledgeable and respected. You will learn that you have to be your own advocate and take control of your care...don't be embarrassed or passive about it.
My case was extreme and I spent many months in hospitals. Lost 40 lbs of muscle in a week and was completely crippled and could not swallow anything. No one expected me to walk or swallow again and I had internal organ problems and many complications. Today I am active and play golf (walk the course), play tai chi, ski, hike......pretty active for an old guy 66.
Most cases are not as extreme. All the docs said they had never had or read about anything like mine. Most are relatively mild and can be controlled by meds. I don't know anything about your neuropathy so I won't try to comment. I had lots of pain but it was mostly in joints and muscles.
The links above might help you better understand the mysterious problem you have. They won't provide definite answers but should help you to understand it better. The fact is that all of us live with a certain amount of uncertainty when we have an AI disease, diagnosed or not.
Hope this helps you understand things better. Feel free to ask more questions. I participate in a lupus support group and also help run a myositis support group and there are others who have MCTD. The Lupus Foundation of America has a support groups in Chicago. You might look into that.
MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.