In honor of Multiple Sclerosis Awareness Week, I asked a few patients who live with both MS and RA (as I do) to share their stories with us today. Diagnosed first with MS then RA, patients AM, ND, and PB share their stories below. Stories from patients diagnosed with RA first can be found on MyRACentral.
When were you diagnosed with MS and when were you diagnosed with RA? ** AM:** I was diagnosed with MS in May 2006 and with RA in January 2011.
PB: The MS diagnosis is a bit complicated, but I am sure that is common. I first became ill, to the point of needing a doctor’s help because I couldn’t function in my day to day life, in 1993. I did not get the diagnosis of probable MS until 2001. I was finally diagnosed with definite MS in 2005. I was diagnosed with RA just this past December 2010. However at the age of 15, I was told I had Arthritis but they did not think it was RA.
ND: I was diagnosed with “probable MS” back in 1975. I was 25 years old and there were no MRI’s to show proof positive. I was told by the neurologist to think long and hard about having children and that I would probably be in a wheelchair by age 50. Over the next 13 years I had such a mild course of MS that being in denial was easy, so I went on to have two children between the age of 28 and 32. My pregnancies were normal and I had no serious MS problems until 1988.
I had become used to having numb fingers and toes and some weakness in my right leg, but in 1988 was what I would call my first big exacerbation which didn’t go away with steroids and left me with definite weakness in my right side. I’m pretty good at adjusting to circumstances so I just kept going and working and being a very active wife and mother. I was much more aware, however, that MS was probably gonna give me a run for my money The confirmed diagnosis came later in 1988 with my first MRI.
What are your primary MS-related and RA-related symptoms? Which disease seems to cause the most concern for you?"¨ ** ND:** By the fall of 2006, my MS seemed to be progressing. I didn’t have the “official” seeming attacks but just a slow steady worsening and more troublesome symptoms that got harder to manage. I was working full time at the same job I had done for over 20 years, but I was exhausted all the time and I was starting to make a lot of mistakes because I just couldn’t concentrate or multi-task any longer.
It was at that time that the first symptoms of RA and Lupus appeared. I was in so much pain in my joints and started a course of prednisone which helped so well and so quickly it was such a relief. I tested positive for lupus and the main problems with that have been the RA pain in my joints and skin rash with sun exposure. I also was so fatigued that I would have to nap every day or I couldn’t keep going.
PB: My main frustration is with what is what…meaning is it MS, is it RA, or is it Diabetes. However I do feel I know which of my pains are MS and which are RA, only because I know what pain I have lived with since a child diagnosed with Arthritis. MS causes me leg pain and over-all body aches that I would describe as pain that a non~MS person might feel if they did a five mile run when they never even walk a mile normally.
I have overwhelming fatigue to where I am so tired I fall asleep in the middle of doing some task (like typing or watching TV) and next thing I know it is hours later. I believe the fatigue is MS however not absolutely sure; it could be from both. I spend lot of time in bed because I just can’t function in the real world. I also have Brain fog which I feel is the MS. [Due to] balance problems, I occasionally have to use a cane and have had to use a wheelchair…that too I believe is MS. Numbness, more on left side of body but some on right, [which] I believe is MS. The pain from MS is neurological pain.
The RA pain is in the joints; worst areas are my hands and knees. The pain along with swollen joints in my fingers is a different pain from what I feel all over my body. My RA pain is easier to pin point. I can tell you right where my fingers hurt, however the MS pain is more of an all-over pain that is harder to “touch.” I know RA can cause fatigue so I guess I just have a double whammy on that issue. My feet are probably effected my the RA but also by MS so I would say the joint pain is RA.
As I try to get a little more coherent [after dozing off for 20 minutes], I realize how much I have to move and stretch my feet and ankles to try to push out some of the pain. There is joint pain in my toes and ankle which is RA and there is an over all ache which is MS. I have really just been diagnosed with the RA so have spent more time knowing about MS so at this time the MS gives me the most concern.
Also I forgot to mention my immune system is shocked, I catch any and every bug out there and what may be a common cold to most will go from cold to bronchitis to pneumonia before I ever know what hit me. I believed this is from the MS, but now that I know more, I think it can be from both.
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?"¨ ** AM:** I’m not working anymore and being sick has a big influence on my life. I keep having to adjust it to the diseases. Every time I think I finally have found a good, balance something new happens to throw me off my feet.
PB: In 1993 my life changed from [that of] an active business woman to a bed-ridden life. I was a vibrant full-of-life young woman with so much going on there was barely enough time in the day to sleep. After two years, I had only my family. All of my so-called friends kind of left me and didn’t even try to understand my illness (labeled as Chronic Fatigue and Fibromyalgia at that time). I had always been the one there for everyone, helping them deal with life and its problems, and now when I needed friends they just didn’t show up. Oh I still have some very wonderful friends, but they live too far away to help but did/do keep in touch.
When I learned to deal with the fatigue a bit better, I knew in my heart that this is what my life was and I had to make the best of it. But my life had changed forever. I could no longer work because I didn’t know when and how long I would have energy. Many of the daily things I used to do, I can no longer do. I can’t even clean my own home as I would like to. I have to depend on my husband to be sure I eat, to get me to my doctor appointments, or to just be sure I get out of the house at some point. I can go days without leaving the house because I just do not have the energy.
Lucky for me my favorite hobbies are crocheting, crafts, and reading. The MS did not really take those away but just made it to where I had to pace myself. The RA makes it painful, but because I have always crocheted, I have helped save the damage and kept my hands working better. I have managed to maintain my family life because they love me and work to help me (well, I must back track I did lose my husband of 20 years due to the MS in 1997, but am remarried to my HS love and he is great),…but no social life left and friends are few.
ND: In 1999 my husband of 25 years and I divorced and I was devastated. As it turned out I was the product of my employers matchmaking and in 2001 I married the most wonderful man I’ve ever known. He has been my biggest support and caregiver and I feel so very fortunate. My MS causes me more disability and concern than the RA/lupus, but the combo of the three definitely impacted my ability to work. I retired and was granted SSDI in May 2008.
What treatments have you tried for either disease? What have you found to be successful? ** AM:** Treatment for MS is Copaxone and treatment for RA is Celebrex and Methotrexate. I just started Methotrexate three weeks ago and the only thing it has done for me so far is make me feel like crap. Hopefully that will change for the better soon. Hard to be loyal to a treatment when you are not feeling a change and it even makes you feel much worse than you did before you started.
PB: I was on Copaxone from 2001 until about 6 months ago when the daily shots just became too much for me to handle. The med made me feel sickish and gave me headaches, plus daily needles and injections hurt too much. But mostly I couldn’t see where it was helping. When I have had relapses I am treated with IV steroid drips for 5 days which does help get me back up and moving for a few months. And in retrospect we now realize it was helping the RA pain too. For the RA, I am taking Methotrexate but so far it doesn’t really seem to be helping.
ND: From 1988 till 1996, I had two or three [MS] exacerbations that always left me with symptoms after the major problems improved. I started Avonex in 1996 and did the weekly shots from then until 2009 when I decided to try Copaxone. I didn’t have a good experience with Copaxone because I would get painful reactions at the injection sites. I went back on Avonex after nine months and continue with the weekly injections to this day.
[In 2006 after the RA/lupus diagnosis], I was gradually able to get off of prednisone and began a weekly dose of Methotrexate (five tablets once a week). So far until just recently the RA pain has been managed with that dosage. By the end of the week lately my joints can be rather painful but I don’t want to take more methotrexate. I am really loosing my hair from that and vain as it may be… hmmm don’t want to be bald :(
I have transitioned from one cane to a walker or two canes and use a wheelchair mostly when traveling or when a lot of walking in involved. I started Ampyra in June 2010 and feel like it was a miracle for me. I don’t walk any faster but my fatigue level improved so much that until just recently I hardly ever had to nap during the day. I’m not sure what is causing trouble for me the last month or so. I’m a bit concerned that it may be caused by a lupus “flare.” I go to my rheumatologist this week.
What information or advice would you like to share with our readers who are concerned about being diagnosed with both diseases? ** ND:** I try to maintain a positive attitude and feel that help is on the way. Turning 60 this year makes me hope they will speed up the process. It would be such a miracle if a cure can be found in my lifetime! I think it is closer all the time.
To newly diagnosed MS patients, I always want to share my 1975 experience and hope they will see me as an example of how well life can be managed with MS. Everyone is different of course but had I followed the advice of the first neurologist, I would not have my two wonderful children and all the joy that goes along with that.
I also proved him wrong by 10 years and now at 60 only need the wheelchair for challenging situations and that’s with the addition of two more autoimmune diseases. Trying to stay positive and learning to except help can be challenging, but for people just being diagnosed I think there is cause to be very hopeful.
Thank you, AM, ND, and PB, for sharing your stories with us!! For additional stories of patients who live with MS and RA, please read more at MyRACentral. ** 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.