Most people have heard of multiple sclerosis but have little sense of what the disease really is or how it affects the lives of those who have it. The latest Patient Voices from my colleague Karen Barrow sheds needed light on those living every day with the disease.
You’ll hear from Mimi and Jonathan Mosher of Mechanicsvile, Va., and the challenges Mrs. Mosher’s MS presents for their relationship. Ann Marie Johnson, 37, of Brooklyn, N.Y., talks about dating with MS, while Jim Minehan, 63, of Scottsdale, Ariz., tells how his bleak outlook following his diagnosis ended his marriage, but eventually led to acceptance and an appreciation for the small things in life.
To hear these stories and others, please listen to Patient Voices: Multiple Sclerosis, and then join the discussion below.
To hear the many other Patient Voices features — on infertility, AIDS, bipolar disorder, prostate cancer and other health issues — see the “related links” below, or click on Patient Voices.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
From 1 to 25 of 97 Comments
My sister-in-law, now in her early 50s, was diagnosed when she was in her late twenties. She has always maintained a positive attitude (as far as our family knows). Her husband is still with her, even now that she uses a motorized wheelchair. What an insidious disease! Yet, it amazes me how she has kept up her sunny disposition.
— B. ChamberlainThis series seems to concentrate on the people who have more serious forms of MS. It should be noted that many, many people have a mild form of MS. I started to have symptoms back in 1987, pretty serious numbness and tingling, but my doctor overreacted, I was scared, I had ALL the tests, which were much worse than my symptoms. I don’t recommend that for people. Yes, I am fortunate. All of my symptoms have been spinal (numbness, tingling, etc.) Sometimes I have trouble walking, but they are not the serious symptoms talked about in this series. I had a bad relapse in 1993, some symptoms in 1997 and just for the last 5 weeks have been numb/tingling from the waist down.
— AmeliaMy point in all this rambling is that people hear Multiple Sclerosis and think the worst. Please be aware that there are many many people out there with minor MS symptoms that only affect their life minimally. This is a relapsing/remitting form of the disease and for me, is not worth taking more tests or taking the medications that have side effects that are worse than the symptoms.
that’s my 2 cents.
This comment is in response to Ms. Gupta:
— Lisa McKenzieThere are many medications available to combat MS. You don’t need to accept the side effects of what I assume is an interferon. Try something else! I had a similar response to Avonex; I, too, was sick half the week. I switched drugs, and switched again. I am now on a drug that has so far halted the progression of my MS for two years. You require, and can attain, an effective drug that keeps you well…in all aspects of your life. You’ve already got MS to deal with; you shouldn’t have to deal with side effects. Good luck to you!
I am 29 and was just recently diagnosed in March after many tests following me losing vision in one eye for the 2nd time in 10 years and going to an opthalmologist. At first it almost destroyed me to learn i have this condition, but afer weeks of feeling sorry for myself i decided to get up and continue my life with increased fervor and determination. So far it hasn’t affected me greatly but God willing, with current medications and better ones in the pipeline, proper vigilance, and sheer determination, i will not let this disease beat me down..or beat me at all.
— A. Negron Jr.As a practicioner of both brazilian jiujitsu and judo, the most important lesson i have learned is to never give up, even when you are knocked down.
I live in Colorado, a state whose prevalence of people with Multiple Sclerosis is apparently higher than that of other states.
Has anyone read any info on why this might be the case?
— Ashley TrailrunnerI can relate to Mimi because I, too, have primary progressive MS. It’s been 17 years now so I am ineligible for studies because I am “too far gone and will skew the results”. My husband left me for a healthy, ambulatory woman after cheating on me for 3 years. My 20-year old daughter is amazing and keeps me going, but she is in college out-of-state and so I have to rely on 24/7 caregivers. It’s hard to keep smiling.
— Audrey GreenfeldAnn Marie Johnson, thanks for your story of dating with MS. Diagnosed with cancer at 27, I know the challenges of dating with a chronically debilitating disease. The rejections from men because of my cancer were creative. I came to almost enjoy watching them squirm in response; I had to make something entertaining out of a bitterly insulting situation.
Many of the men and women who I’ve interviewed for my book about living with cancer in your 20’s and 30’s talk about being single. Some say heartache is worse than the disease itself. I’ve since married, but I never forget that I could just as easily be 36, still single, with cancer. I assume the entertaining parts of rejections would have worn thin by now. Good partners are out there for people like us, but it is a lot of work finding them!
http://everythingchangesbook.blogspot.com/
— Kairol RosenthalI kind of wish they would have gone a littler broader and discussed the many faces of autoimmune disease. While MS is clearly the worst of the autoimmune diseases they are all linked together. Once a cure is found for MS, Lupus, RA or the multitude of the immune disorders, it will simply be a matter of time before they are all cured.
— MaureenMS patients do live within a broad spectrum of symptoms and prognoses.
The NY Times has done an excellent job of finding varied disease impact stories, varied attitude disease-acceptance and adaptability responses, and individualized integrations of the disease in one’s life.
Perhaps the only things I’d add would be to stress what medical interventions are used to help manage some forms of MS.
I am especially astounded by how many thousands of dollars /month my own MS injection medications cost.
We still don’t even understand how a person develops MS.
What are the triggers which cause future MS lesions?
I can understand how a person might say, “now is the best time ” in American medical environment to find out one has MS.
I compare Polio to MS. We eradicated polio through vaccines. Why not MS?
It would be far better for everyone to hear, the time has begun when no one develops MS.
— Brookein response to Ashley’s question;
for some reason, unknown for now, white women in their late 20’s who live in northern climates, or who grew up in the north, seem to be the most likely to get MS. Obviously others get it, but a larger percentage fall into this group. Also, if you have an onset at an older age it is more likely to be the serious form of MS that Audrey, Mimi and others are dealing with.
There is a newly updated version of a book that I have always preferred;
Multiple Sclerosis: New Hope and Practical Advice for People with MS and Their Families
by Louis Rosner and Shelley Ross
it explains what is known about MS in a very common sense kind of way.
— AmeliaI strongly agree with Amelia’s book recommendation. This was by far the most helpful book I found after diagnosis.
— MaryThanks to all involved in producing this and for the brave people willing to talk about how MS affects them. I’m one of “us,” early onset (28, very scary and debilitating), eventually diagnosed with relapsing/remitting, and very very very lucky. I’ve written about my experiences, most recently in Ars Medica, a literary magazine, in “Feeling Numb”
Having tried many alternative approaches–as well as maintaining a strong link to my neurologist–I offer my experience.
–jessica
— jessica lipnackIt is a shame these patients have either not looked into using Tysabri, the newest and most effective MS drug available for relapsing forms of MS, or have been misled by the misinformation circulating about the safety issues with Tysabri being associated with PML. For the vast majority of MS patients with a relapsing form of the disease, who have not been on immunosuppressant drugs in the past year or two, Tysabri has a very low incidence of PML (just one case out of about 38,000 patients currently on the drug, and that patient is recovering nicely). Moreover, if patients are properly monitored so that any incidence of PML can be detected and properly treated early, it appears that PML can be largely reversed and not be fatal. In contrast, for the many patients who are using the less effective older MS drugs, or are not using any MS drugs, their MS disability is progressing every year, and they run the risk of significant disability with each MS relapse. That danger is much greater than any risk from PML.
The efficacy of Tysabri is unsurpassed, and many patients on the drug (which is infused every four weeks, so no daily/weekly self-injections) have seen improvements in many areas of their disability, as well as in their quality of life. Some have been able to give up their wheelchairs, walkers and canes, and some have been able to go back to work, resume driving, and playing with their children. Most patients will see a slowing of their disability progression, and a significant reduction in relapses and hospitalizations compared to MS patients on the older MS drugs or on no therapy. Tysabri is not associated with the flu-like symptoms and injection site reactions reported by many MS patients on the injectable therapies, so the elimination of those side effects also contributes to improvements in quality of life. If you have not asked about Tysabri, or if your neurologist has dismissed it, get another opinion. It is your life — you deserve the most effective treatment that is appropriate for you.
— DavidI am one of the people in this series. Some of the comments from other people are exactly what makes this disease so frustrating. If it were only as simple as taking a different drug. First of all currently there is no drug that works for Secondary Progressive MS. (SPMS) I know that I had MS for 10-15 years before being diagnosed. Perhaps if I had started on one of the MS drugs earlier I would not have progressed to the point I am at now. Secondly, I happen to have multiple allergies to medications which has also hindered my treatment. I am very thankful for my initial neurologist who tried many different treatments but as I continued to progress I now have an MS specialist who is wonderful and I thank God there are people like him in the world to help people with MS. I realize ther are many people with MS that carry on “normal” lives. I was told by one doctor that some people with MS still run marathons, and that I have MS ” it will do what it wants to do.” The whole idea is that MS is a broad spectrum disease, and if more people including the medical profession understood the disease better, maybe it could be like “polio” and eradicated completely. Amy
— Amy AdrianAmy, thank you for participating in this interactive feature. We all are very appreciative. I am curious. Do you currently have Secondary Progressive MS? I thought that was something that happened down the line. From your interview it sounded like numbness and tingling were what you were dealing with. Forgive my curiosity, I am just wondering what to expect in the long run. I’m a little thrown by my symptoms appearing after quite a long lull.
thanks again,
— AmeliaAmelia
Thanks to Brooke for noting that there is a broad spectrum of symptoms. One not mentioned is the prevalence of cognitive loss, which can make full time work as well as some day to day tasks daunting. Disability - especially invisible disabilities -in the workplace is still widely misunderstood. THose of us with cognitive impairments are often advised by our MS support groups, counselors and Employee Assistance Programs not to reveal our conditions to anyone at work.
I have not yet been slayed by the MS dragon. Living with this disease is uncomfortable and inconvenient, but not life theatening. I try to maintain a positive attitude by focusing on the triumphs of getting over each hurdle and relishing time spent with loved ones. The future looks promising for additional forms of treatment and columns such as this will help remove the confusion associated with this condition.
— JoanneI have worked with thousands of people with MS as a social worker in Seattle (an area that has a very high incidence of the disease.) It is very important to understand that, although symptoms may precede a diagnosis by many years, the most common form of the disease cannot accurately be described as relapsing-remitting any more. The symptoms may remit, but the neurological evidence of continual progression can be seen on an enhanced MRI unless one is taking one of the medications that slow this progression.
— ann crickmer, mswI would also like to reinforce the understanding of cognitive - memory, organizational abilities, and the ability to prioritize - as well as emotional changes which may affect a person with MS if the axonal damage is in the limbic portion of the brain. Organically caused depression is very common, and the very disabling bipolar symptoms 15% greater than in a non-MS population. These are serious challenges to quality of life and need treatment as well as the more commonly understood sensory and motor sympoms. Be sure to seek out a counselor to help you cope with these “hidden” symptoms which does contribute to relationship issues, and employment problems.
I would also like to thank all the individuals and families living with MS for sharing their insight and coping skills with me. I am in awe of the resourcefulness of these people.
Ann Crickmer, MSW
Seattle
Time is Brain.
Early treatment means slower progression and fewer relapses.
The injectible drugs have a 28-32% efficacy rate as compared to placebo.
Tysabri is an infusion given every 28 days, that has a 67% efficacy rate as compared to placebo, and IT CAN BE USED AS FIRST LINE TREATMENT!
I was a whitewater guide until I was diagnosed with MS in 2004. I was supposed to start Tysabri before it was pulled from the market due to the PML scare in 2005. I started Copaxone and it did nothing for me. Then Tysabri was returned to market.
I have had 21 infusions of Tysabri so far.
My vision is back to normal. My balance is back to normal. My stiffness and spasticity have been reduced by 2/3 or better.
My cognitive skills are back to normal.
I have not had a relapse since May of 2007, when I started Tysabri, where I was cycling through relapses every 3 months or so before I started Tysabri.
I received my MRI results after 18 months of treatment , and the radiologist’s report reads: NO new lesions, NO enhancing lesions, previous larger lesions are greatly reduced or GONE.
There needs to be more reports on Tysabri. People are getting up and walking, running marathons, and just living life again! I fully believe that I will return to doing the job I love, with the help of Tysabri.
— NancyI am glad you published something about MS. I know 3 people who have this disease, and I don’t know if it is much more common than I thought, or what. It seems to be different for each of them.
Any way you could print this, or put it in text form? Perhaps I am the last of your subscribers with dial-up service (which means videos stop and start, and I get to hear only a syllable or two at a time.) My alternative for anything fast is the public library, where sound annoys people.
FROM TPP — Unfortunately we don’t have a transcript of this. (I can’t imagine life with dialup), Hopefully you’ll find a place where you can listen to this (just bring earphones to the library). meanwhile, the feature includes photos with a lot of information in the text that summarizes the stories for people who don’t want to listen to the audio feature.
— KJI was diagnosed with MS 18 months ago. I was lucky that the doctors I saw with what I initially thought was a hip problem were persistent to getting to the right answers. MS symptoms are so bizarre and varied that frequently many, many patients are told their symptoms are in their head.
The biggest issue that I have faced with this disease is the enormous FEAR that is associated with it. If you ask specific questions you get vague answers. Given my job, I was concerned about disability. I posed a question to my neurologist who has been practicing since prior to the release of the immunomodulating drugs. The question was how much decrease in disease progression has he really observed clinically since the introduction of these drugs? His vague response was to say that he has patients who run marathons and those who are paralyzed and on a ventilator on their first attack.
I suspect many don’t take Tyrsabi because it is not listed on insurance formularies. My pharmacy insurance only covers Copaxone, Betaseron, Rebif and Avonex - or the ABCR drugs as they are sometimes called. However, I too, crabbed at the neurologist when he handed me the Copaxone packet and I pointed out on first glance that I thought the difference between placebo and drug were meager. The response is generally that you want to reduce the number of lesions.
MS is a very complex disease that is most likely multiple components that eventually lead to a syndrome. There are 5 forms including benign, relapsing remitting, primary progressive , secondary progressive, and progressive-relapsing. There are as many plausible causes of MS as there are quack treatments for it.
As for why Colorado has a higher incidence, hard to say. It was also known that the Faroe Islands of Denmark had no known cases of MS until the British arrived before WWII. It could be a combination of a pathogenic agent combined with genetic clusters in Colorado. The problem in the US is that there is no database or tracking of the disease. Other countries, Sweden for example, have a record of each case to determine if there are clusters. The interesting thing is apparently the native Lapps way up north seem almost immune to this disease. So, it is doubtful that it is truly related to Vitamin D levels.
Having said all this, I am lucky that I’ve not lost function or mobility. I firmly believe that vigorous exercise is critical - even if you don’t feel like it. On days that I have my worst symptoms, I get relief from vigorous exercise - in contrast to how the docs tell you to rest up. I believe exercise releases important brain derived growth factors (actually this is known scientifically - whether it helps MS or not is not known).
What is important for everyone to realize is that people with this disease suffer. Some suffer silently with spasms, pain, etc, but no cane, walker or wheel chair. I have symptoms nearly every day. It is incredibly annoying to be working on a manuscript and get spasms in your abdominal region that makes it feel as if you are being kicked in the stomach. It is annoying to have your hand feel like it is slowing down when you are typing emails to colleagues or students - or trying to use the mouse to fix a detailed figure in a manuscript. We cannot compare our severity of disease with each other and say things about how for most people the symptoms are just mild. For this is how my family behaved towards me. When I informed my father, his response was that he knew someone with MS and they just walked slow. So, no big deal. We ALL SUFFER with this awful disease.
— AnnelisI would like to respond to Amelia, yes I have SPMS now. However, do not think that you will also follow that path. The incredible and frustrating part of this disease is that some people never get “worse” and have very good success with the “MS drugs”. I guess that is why I want a lot more info. out there educating people with and without MS so there aren’t so many pre-conceived ideas of what MS is. We are NOT MS. We are people living our lives to the best of our abilities who happen to deal with issues from cognitive problems, vision, depression and others that people do not see but affect us very much, such as bowel/bladder problems, numbness/tingling or just pain to touch. The list can go on and on and it doesn’t matter, my hope is that ignorance is bliss and knowledge may actually help alot of people better understand. I was impressed by the comment by Ann Crickmer, ther is a real need for more people like her that have the knowledge and insight of how MS can impact people. If I can give you any one thing to take with you, live your life to the fullest and even when you are having a “worse time ” find something to redirect your energy to. I have picked up several hobbies and I refuse to let the disease live my life. Amy.
— Amy AdrianI was diagnosed with MS in 1995 (about two months before a diagnosis of cancer - quite a cosmic joke, I thought), after several years of strange symptoms, the hallmark of which were their eerie disappearance. Therefore, for several years, I paid no attention, until leg strength got in the way of skiing.
Thanks to the NYT for this series. I particularly find difficult with what someone pointed out as the unique nature of the disease being its insidiousness. It’s not that one day one simply cannot walk, such as with trauma - it’s that there are progressive losses function that I am in fairly progressive grieving. One says to oneself, “Ah! I remember when I could (fill in the blank)! Ehhh! Flippin’ MS!”
My family, siblings and children in particular, were the most difficult. Several of them don’t believe there is anything wrong with me. I look fine, with the exception of using a cane. When someone says,”Wow! You look great!” I have a burning desire to say - “Take my body - please - if only for thirty minutes and and then let’s talk. And, FYI, it took an enormous amount time and energy to just get out of the house and try not to look like I’m not Uncle Fester so I don’t scare small children.” Showering and grooming are flat exhausting.
It’s particularly hard for family and friends, in my case, to cease seeing me as this unstoppable multi-tasking parent and professional. I now ask for and accept help, which was difficult, and find that things now take a greater degree of planning.
Once again, many thanks for the sensitive series, to the participants and the folks who have commented. MS certainly runs the gamut for all of us. I find that how I cope and accept myself is the key.
— Sue Di PaolaHow odd that we are so hopelessly positive. I completely echo the sentiment that this disease has made me a better, more forgiving, more open, more humble, and more eager person.
I recently wrote this, in response to the whole weird journey.
to my brain, after the diagnosis
Dear friend, I’d like to to tell you
how much I like your wit,
your company, our banter. I think,
how clever, that you always knew
that we would be okay.
I always trusted you.
And now I feel that too much has been said;
— Sashawhat do we need of their conclusions?
When all is done, it’s only you and me;
I picture us both wrinkly old
and walking down the boardwalk braced
against the ocean wind; we must be
trying to remember where to go,
because the distances are endless,
and there is everything to learn.
I have MS and it sucks. I was diagnoased late July this year, two weeks before my wedding. I started on Avonex in September. I am doing OK with the drugs but won’t know if Avonex is working until I have my next MRI in April 2009. I have quit telling others, as many people have pre-conceived notions about the disease. I chalk it up to ignorance but that ignorance has impacted my career in the worst way. I have recovered my career but I live in fear everyday that someone will find out. I hate living with this secret. I am in a professional line of work and that professional career couldn’t protect me. I am still shocked and saddened that my career was impacted. I have a great personal support system, thank goodness. I guess I’m lucky in some respects since I don’t have super obvious side effects. I don’t think that MS is some kind of gift that is supposed to make me a better person. I know that sounds bitter. I am thankful for all of the good things in my life but I refuse to see MS as something from which I’m supposed to learn. Kelly
— KellyHi I am one of the people featured in the article and let me say thank you to everyone for their comments. Just like there are many faces to MS, how MS manifest itself can be unique to each person as well. Someone had said “You deserve the most effective treatment that is appropriate for you.” That is so true but what may be appropriate for one person many not be for another. When choosing a medication there are many things to consider and you must work with your doctor (hopefully a MS specialist) as a team to find what is appropriate for you. Much time went into my decision and I have not stopped doing my research (we are so close to having an oral medication – check out the National MS society website for more info on research). My first and God willing last attack was at the time of my diagnosis and my MRI’s are fine. So I say, if it’s not broke don’t fix it - smile. As for me and dating, I won’t let MS stop me from putting on my little black dress and three inch heels as long as I can (besides I love a free meal - smile)! Articles like this reassure that you are not alone and hopefully more will be done in awareness for MS and autoimmune illnesses as a whole. Good luck and God bless to those in their journey with MS and / or any chronic illness.
— Ann Marie Johnson