Sue W: UCTD with Neurological and Musculoskeletal Involvement

Hi, my name is Sue and I am thirty-six years old. Prior to this unique onset of symptoms I worked as a nurse and I was a very independent, self-sufficient single parent. I did all my own home repairs, took care of an acre of land with an in-ground pool and now there are days I cannot even get out of bed.

I have spent the last two years trying to get answers and I have been seen by the best doctors in the country, both in Philadelphia and at the National Institute of Health in Bethesda, Maryland, which is an amazing place. I continue to have multiple symptoms: joint pain, tendon laxity with joint dislocation, all my tendons are slipping out of place; Sjogren's, Raynaud's, morning stiffness, poor sleep from constant pain, a foot tremor with foot drop, weakness and I tend to drop things all the time, fatigue, skin rash all over, alopecia, increased difficulty with activities of daily living (ADLs), unable to lift more than one to two pounds, cannot do most household chores, unable to get out of bed some days, especially after doctor appointments that I have to be driven to.

It is pretty pathetic when one of my two aging arthritic parents has to drive me, but I am blessed that I still have them around. All my blood work is essentially normal, An MRI of my brain showed non-specific white matter changes. I have trigger finger and an elbow that popped out of place. I wear shoe orthotics and hand splints on both hands to minimize tendon slippage. I was doing physical therapy, but my doctors felt I should stop because my joints, especially my hips, knees and feet, were becoming more unstable. I use a cane and many other assistive devices daily.

All of the top doctors I see say they have never seen all these unique problems in one person, yet I do not fit a specific criteria for diagnosis. It has been very frustrating and depressing, but I am grateful for the days I can get out of bed. I count my blessings. My son has been very helpful and I feel guilty with how much I demand of him.He is only fourteen years old, but he will make some girl very happy some day. He makes a great cup of coffee. Unfortunately, he has had to grow up faster than he should.

At the beginning of this onset I met my current husband and he is godsend. He is so good to me and my son. When I started getting worse I told him if he wanted to call off the wedding I would absolutely understand. He got mad that I would say that, but I felt it had to be said and to let him know he had a way out if he needed it, and I would understand. I cannot believe he still married me. What he has given me is true unconditional love. I feel guilty when he cooks and cleans.

The way the doctors are talking, this is going to become progressively worse and they are not sure how to stop the disease process. I am trying to accept that I may never be able to do my job as a nurse ever again and it is really hard. I went from professional nurse to professional patient in an instant. I was always the caregiver for everyone else, friends and family when needed, and I find it really hard to accept others' help. I sometimes just break down in tears from frustration of not being able to open, lift or wash something, but then I think it could be worse.

I am waiting patiently (not!) for the day the doctors say we know what you have. I have doctors jokingly say they may have to name it after me and I really do not think that is funny. I still have hope and my faith, my friends and family helping whenever possible, a wonderful husband and great son. What more could I ask for? (A diagnosis and cure would be nice.)

If anyone else is feeling frustrated, scared and depressed about health issues, you are not alone. There are many great resources out there for you.