Of the ten people who participated in the chat, three of us are diagnosed with both multiple sclerosis AND rheumatoid arthritis. One of those three is more recently diagnosed with lupus as well. Her name is Nancy and she asked me about my diagnosis and treatment choices.
It was interesting that 30% of the participants in that one chat session were diagnosed with at least two autoimmune disorders, including MS and RA. I am aware of a few more MS bloggers who have the same diagnoses. If the National MS Disease Registry Act ever becomes a law, then we will have more information about these "double-dipper autoimmunies." (Don’t worry about researching that phrase, I just made it up.)
So here is the abridged historical version of my diagnosis with MS and RA.
Background: In college I was a music major, piano performance and instrumental music education, and had planned to be a band director. Turns out I have trouble thinking straight with too much sound and stimulus coming at me at once. So I proceeded to get a graduate degree in horn performance and from there a doctorate in music literature and brass pedagogy with minors in music theory and natural horn performance. (Side note: Musicians often practice and perform under situations of physical pain and discomfort.)
In 1993, I experienced some vision problems and eye care on campus was provided within the School of Optometry. Eventually I underwent MRI scans looking for a possible brain tumor, but nothing was found out of the ordinary.
In 1995 or so, I tripped and fell on the way to perform in a concert. My horn was mangled and I cracked the bone above my elbow. After recovery, I developed an achy arm to join my "granny leg" which reliably alerts me to changes in weather and my mother was diagnosed with her own autoimmune disease.
In 2000, I experienced a blinding bout of optic neuritis, literally lost all vision in my right eye for almost two months. The day that the lights were going out, I was seen by three eye professionals in three different offices in Northern Virginia and Maryland. This time the MRI scans showed inflammation, but no demyelination nor a brain tumor.
In 2001-2003, I complained of my hands not feeling quite right - very sluggish, thick, and achy - while I also felt general malaise and fatigue. Of course I mentioned the previous optic neuritis, in addition to having a relative diagnosed with lupus, during each visit. Blood tests came back negative for rheumatoid factor or ANA and the SED rate, which measures inflammation, came back elevated. Nothing measured so greatly out of the ordinary that it alarmed the doctor.
In 2005, I experienced undeniable symptoms in my left hand/arm/fingers (same arm which had been broken previously) which sent me to the doctor. By then I was seeing the new PCP who had joined the family practice. I was experiencing tingling from a supposed pinched nerve in addition to great fatigue which concerned me of possible lupus again. All blood tests came back normal, but the tingling and numbness from my "pinched nerve" grew up my arm, over my shoulder blade, and to my spine.
It was time to visit the MRI machine again and ultimately I was diagnosed with MS later that year by a neurologist. Due to the decreased strength and dexterity I lost in my left hand/fingers, I began occupational therapy with a hand specialist to rebuild lost function. It took over two months of hard work to gain control again.
One year after being diagnosed with multiple sclerosis, I began experiencing excruciating pain and debilitating stiffness in both of my hands. My first thought was, "is this spasticity? and if so, this sucks!!" Off to the neurologist I went and he said…carpal tunnel syndrome. I was not convinced but we started treating it conservatively. The nerve conduction tests and electromyogram did show some mild CTS in one hand, but not the other. Puzzling.
Even the neurologist was surprised as my test results did not correlate with my pain level so he referred me to a hand surgeon who injected each wrist (at different times) with steroids to take down any inflammation. It was wonderful!!! The pain subsided greatly within days. Bad news was that this meant when the pain returned I would need surgery.
On the final visit to the hand surgeon, I asked (again) about a finger which had doubled in size. Previously we had agreed that it was the least of my worries and he had thought that it was a cyst. This time, though, we had more of an opportunity to examine it and talk about it, even taking x-rays. He recommended that I see a rheumatologist and even offered to call their office if I had trouble getting an appointment. My preferred neurologist, and his as well, was not currently taking new patients but I got in anyways.
During our first visit in April 2007, and six months after my hands became practically unusable, I was diagnosed with rheumatoid arthritis. I brought with me the x-ray films and results of blood tests conducted since 2000. The doctor asked me about symptoms which led to each blood test. With that information and a nifty ultrasound test she conducted in the office, I was diagnosed with RA. She also told me that if she had seen me during those previous mild RA flare-ups, then I would have received a diagnosis much sooner.
Did this mean that we could take away the MS diagnosis? Nope, not so easy. It is possible to have more than one autoimmune disease. Not fair, but somewhat common.
To treat the RA, my rheumatologist wanted to take a 3-pronged approach - methotrexate, sulfasalazine, and plaquenil. Personally, I couldn’t tolerate the plaquenil but continue with methotrexate and sulfasalazine which have worked wonders. My arthritis is under control enough that I can distinguish between mild flare-ups and remissions.
Thankfully, I haven’t had anymore debilitating flare-ups and the deformity which started on my left hand has stabilized. Also I want to say here that folks diagnosed with carpal tunnel syndrome should at least consult with a rheumatologist. My CTS is practically non-existent now…and that’s without surgery. Unfortunately, this isn’t the case for all. (see this question).
When I mentioned the RA and new drugs to my neurologist, he said, "that’ll be good for your MS, too." It’s interesting that methotrexate is sometimes used to treat multiple sclerosis, but folks who use methotrexate MUST supplement with extra Folic Acid (at least 1mg daily) to avoid the toxic effects. Please remember to get your liver functions testing every other month.
So to my fellow MSers who are double-dippers in the autoimmune barrel, we are here to support each other. Special thanks go to Nancy D who coined - "autoimmunies r’us." Hope this answers some of your questions.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.