Patients living with more than one chronic disease face unique challenges. Unfortunately, comorbidities seem more and more common especially with autoimmune diseases. As someone living with multiple sclerosis and rheumatoid arthritis, I am understandable drawn to other patients who live with the same combination of diseases.
This week is Multiple Sclerosis Awareness Week so I asked a few MS/RA patients to share their stories with us today. Six patients were kind enough to contribute. Diagnosed with RA before MS, patients AH, CL, and Momuv6Boys09 (MB) share their stories below. Stories from patients diagnosed with MS first can be found on MS Central.
When were you diagnosed with MS and when were you diagnosed with RA?** AH:** I was diagnosed with RA a few months before my diagnosis of MS in 2008. Having the two diseases together somehow tripped up getting a diagnosis.
MB: I was diagnosed with RA first. It was the MS symptoms that had me looking for a diagnosis and they found the RA. I cant remember the dates on the RA diagnosis right now. The MS diagnosis was last year in May or June.
CL: I was diagnosed with RA one year before my MS diagnosis [in 2007].
What are your primary MS-related and RA-related symptoms? Which disease seems to cause the most concern for you?H: RA has many of the same symptoms and pain as MS [for me], however RA has swelling and deformed joints while MS brings paralysis. The RA causes swelling and pain in my arms and legs, and the MS causes extreme muscle pain to the point of not being able to walk or hold a cup of coffee. With the RA I have a lot of days where my hands and legs are so swollen I can’t wear shoes, my watch, or long sleeve shirts. MS causes me to drag my left leg and I fall quite frequently, however I can’t save myself because of the pain caused by the RA.
I am more concerned about the damage done by the RA. It’s permanent and MS isn’t. RA has the ability to damage my heart and cause my death as well, so I focus most of my treatment on getting it under control.
MB: Really for me RA is the worst!! My RA symptoms [include] swelling, stiffness, and pain. My MS symptoms were not active for the last 6 months, [but] I recently started having numbness and tingling and horrible eye pain. Balance issues as well. My doctors told me last week they think I am in a FLARE.
I also have Systemic Sclerosis (Scleroderma) and those symptoms are painful too. My esophagus spasms and that causes a hoarse voice and sore throat. My skin feels like its on fire at times. I have Raynauds as well. I deal with a lot of pain and [take] very few pain meds. My immune system hates itself.
Have the symptoms or potential disabilities caused any challenges in your ability to continue working, enjoy hobbies, or maintain a satisfying social and family life?** MB:** I struggle with walking and with keeping up with conversations, so I am not as social as I use to be. I stopped working 6 years ago, due to fatigue, tremor and pain. My family life is wonderful because my husband and six boys understand that I am fighting these diseases. Extended family is not always as forgiving, but I don’t worry about it.
AH: I am a horse breeder and have always been extremely active outside. Most of my days are spent trying to find some relief from the pain in my arms. If I stay on steroids around the clock, I am able to perform my work. The steroids however carry a double edged sword in that they are helping to expedite the damage to my bones. It’s not a winning situation.
What treatments have you tried for either disease? What have you found to be successful?H: I have no health insurance and so I chose to take an immune inhibitor, plus I use the chemo drugs on a weekly basis. I try to stay away from the steroids as much as possible but sometimes I just need to get some relief.
CL: I started taking LDN [low dose naltrexone] a little over a week ago. That is all I take for my RA now. Just FYI, I [was having] horrible pain for about 3 weeks with my RA before starting the LDN. Within 2 days of starting the LDN, my RA pain was gone. So, the LDN is letting me kill two birds with one stone!
MB: Methotrexate has been a LIFE SAVER FOR ME!! My doc wants to try it for the MS. I already take it for the RA. I take chemo drugs (cytoxan and another) for the Scleroderma. It makes me ill (nausea, fatigue) sometimes. But it helps. I really don’t take anything for the MS. I am not interested in adding more drugs. I take Flexeril, Neurontin, BP meds, Amitriptyline, and Crohns drugs when my Crohns is in a Flair.
What information or advice would you like to share with our readers who are concerned about being diagnosed with both diseases?** AH:** As far as advice, one thing I have found out is if you have RA and MS, it’s very likely you have other auto-immune diseases. I am asthmatic, have Type II diabetes, have had excema since I was a small child as well as vitiligo and psoriasis. Basically my immune system is shot to hell. Have a full scope of all your immune system to make sure it is working. Not all symptoms are MS related. Of all of them I think as long as the MS is Relapsing-Remitting, I would concentrate on controlling the RA. Your chances of dying are increased tremendously as compared to the MS [alone].
MB: Honestly I look at it like this, having one [disease] is as bad as having them all. Neither of these illnesses are FORGIVING and at times both can be VICIOUS. My concern is not what they take from me, but what I can gain from them. Compassion, understanding, patience. All things that have grown for me since I became sick. I spent 8 years in LIMBO. So I am just GLAD to have a name for these things that drive me crazy. It takes strength and fortitude to deal with chronic illness no matter how many there are. If you can wake up everyday and stand against one, then you will be able to stand against two.
Thank you, AH, CL, and Momuv6Boys09 (MB), for sharing your stories with us!! For additional stories of patients who live with MS and RA, please read more at MS Central.** Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.**
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.