What Do I Have Now?

Learning to cope with multiple autoimmune and movement disorders is challenging. I was recently doing some research on the National Institutes of Health site and learned that it is fairly common for people with autoimmune and movement disorders to be diagnosed with 2 or more conditions, sometimes simultaneously.

I clearly recall my first diagnosis of an autoimmune disease at the age of 33. My husband and I were active members of our community. We were raising our family of 3 young foster children and our newly adopted infant son.

Noticing some changes

I began noticing some unusual changes in my body. Unexplained rashes, low-grade fevers, intermittent joint pain, swelling, and general fatigue. I ignored these odd occurrences although they were puzzling.

They never lasted long. I did make a few doctor's appointments. Usually, the symptoms would be gone by the time the appointment was scheduled and I canceled as there wasn’t anything out of the ordinary.

Due for my annual exam, I kept a simple log to share with my family physician. He sent me to see a rheumatologist and a blood test indicated that I had systemic lupus erythematous.

Seeing a neurologist

Eight years ago I began having very rapid tremors in my legs, but only when standing. They would stop immediately upon sitting or walking. The tremors began to interfere with my daily life. Trying to stand in line at the grocery store, buffet lines, or just chatting with a friend in a parking lot was difficult.

After an MRI didn’t provide any answers, I was referred to a neurologist. A very extensive examination determined that I had a rare movement disorder known as orthostatic tremor syndrome (OTS).

The only treatment is medication, some of which have been used for Parkinson’s. I saw the neurological team regularly and the medications seemed successful.

Over time, I began presenting with symptoms that were atypical of OTS, and my med team suspected Parkinsonism. When I started falling and freezing, Sinemet was prescribed. The freezing and falling were relieved as soon as I began taking it. In August of 2020, the diagnosis of Parkinson’s was made.

Similar conditions

These conditions do have commonalities although each is its own entity. None have a known cause or cure and they are progressive. All are treated with medication to address symptoms, but they cannot cure or stop the progression.

They are also challenging to diagnose. Symptoms vary widely from person to person. The neurologists are often unsure which disorder to suspect.

Unfortunately, that can result in additional tests. Honestly, it doesn’t seem to matter to me what the cause, just what can be done to alleviate the problem.

Lifestyle accommodations

After my lupus diagnosis, my husband and I had to learn to readjust our lifestyle. The changes we made apply to all my current conditions as well. Evaluate your current lifestyle, finances and activities and set priorities. Is it more important to have a spotless kitchen or to play with your children?

Find something you enjoy that you can do as a family. Keep doing the things you enjoy if possible. Accept what you can no longer do and focus on what you can. If finances permit, hire someone to help with the tasks you are no longer capable of.

Learn how to pace yourself. Do the best you can and know when you need to rest. Learn to say no to invitations, requests to volunteer, or doing a favor when you are not up to it. It’s ok to cancel a previous commitment.

Learning about your disease

Learn as much as you can about your treatment. Share how your disease manifests itself. Join a support group and be a spokesperson. We owe it to one another. Keep a journal of symptoms - your medical team can’t help if you don’t let them know what you are experiencing.

Communicating with others

Communicate with all members of your family openly and honestly. Acknowledge your appreciation for the love and support you receive daily. "Please," "thank you," "you’re welcome," and "I love you" go a long way.

Ask for help when needed. Many friends and family are just waiting to be asked. Give your primary caregivers a break.

Choosing joy

Live with gratitude. Find something to smile or laugh about every day. Make someone else smile. Stay positive and remember that life is complicated. Be happy right now or you may run out of time. Choose joy!