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Julie  Stachowiak, Ph.D.

What Part of Multiple Sclerosis Are You the Most Afraid Of?

By June 30, 2012

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I've been thinking about this recently. As I was going through the diagnosis process, the most horrifying image that came to mind was a wheelchair that I thought would be my destiny. As the years have gone by, however, the prospect of being in a wheelchair does not scare me anymore. I don't know what has changed, but I just know that if it comes to that, I would be okay. Yes, I know life would be more challenging in many ways if I had to use a wheelchair or scooter, but I would still be me.

I guess what scares me most about MS is the cognitive decline. Cognitive dysfunction is one of my main symptoms. I was tested a couple of years ago and the evaluation revealed that my attention span is shot and I have lost a significant number of IQ points. I can still hold my own most of the time, but there are times that I am confused about conversations or movie plots or complicated journal articles that I am pretty certain would not have been at all challenging for me in the past.

I try to be brave about this, but sometimes I let myself wander into the dark places where the question "how bad will this get?" is foremost in my mind. I know that I will not decline into frank dementia, but I am still not happy with the moderate "brain fog" that may be getting worse.

There. I have shared my fear. Now I'm asking you - what part of MS do you dread the most? I guess some would say that it's better not to think about these things, to keep looking forward and being grateful for what we do have. While I agree with the idea that we shouldn't dwell on "what if?" and "why me?" sort of things, sometimes bringing these things out into the light takes some of the scariness away.

Share your thoughts in the comments section below.

July 1, 2012 at 3:46 am
(1) Daniel K says:

When I was first diagnosed and began reading about the disease, the thing that scared me the most was the possibility of bowel problems. Everything I read suggested that would be highly unpleasant.

Fortunately, I have not had any such symptoms.

So now what scares me the most, physically speaking, is that my memory deteriorates. Sometimes I feel it already has, but then who knows if it is due to MS or just having a poor memory in the first place. So I try to write down things more, particularly when it comes to work, as there is so much to remember.

Otherwise, my biggest concern is the cost of this disease to me financially. I can only hope that I will always be able to afford the premiums and prescription costs, but I can easily see the insurance companies and pharmaceuticals jacking up prices even further than the already ridiculously expensive levels they’re already at. I feel at the mercy of the marketplace, and the marketplace has never worried much about individuals in the pursuit of profits.

July 1, 2012 at 6:56 am
(2) Jen says:

My biggest is blindness. I’ve had several flares that affected my eyes. In the big picture, my fear is not being able to take care of my family because of an MS-related disability,

July 1, 2012 at 8:33 am
(3) ChicagoMS says:

I was diagnosed 4 years ago. It should have been diagnosed about 15 years ago, but the insurance company pushed back on the MRI costs, and it was explained away as optic neuritis. At any rate, vision, balance, bladder, numbness/tingleing, and fatigue are my major issues right now.

What celebrities, and Mrs. Romney, don’t understand is that it’s a constant struggle with health care providers, to get them to approve, and pay for, any of these treatments. Every year it seems to start over, and the hoops that have to be jumped through to get meds never seem to end.

I can’t disclose at work. My symptoms are, for the most part, not obvious to others around me, and I need to work to cover the expenses. I can’t cut back, and I can’t slow down. I hit the ‘maximum out of pocket’ cost every year (about July/August). I don’t take any vacation days until the end of the year, because I don’t know if I’ll be ‘sidelined’ at any time.

I don’t have helpers, house keepers, assistants, etc. who can do work for me when I’m in the midst of an exacerbation. I don’t have the ability (funds) to go horse riding to help with my balance.

I’m not trivializing Mrs. Romney’s condition. I get it. Recognize though, that Mrs. Romney does not have to worry about hitting the lifetime maximum with her insurance company (repeal the ACA, really?). She doesn’t need to worry about losing her job, and her family’s insurance, house, savings, if that happens. A lot of us do.

So, Mrs. Romney, don’t just be a spokesperson for the disease that you have, be a spokesperson for the disease that most of the rest of us with MS have. Talk about the uncertainty, stress, costs, and fears that the rest of us have in addition to the disease.

July 1, 2012 at 1:14 pm
(4) Days says:

Most afraid of and suffering it! Cognitive disability! Has affected my life and my work! It is by far the hardest thing to accept!

July 1, 2012 at 1:45 pm
(5) Wa-State Concerned says:

As a caregiver for my husband diagnosed in 1988 (should have been 1978)….the dementia is the toughest part of this horrible disease. Since 2003 he cannot be left alone. He no longer reads as he cannot absorb one sentence, let alone a page. Conversations leave him far behind and responding inappropriately, his short term memory is less than one minute and he has no sense of time, hunger or other’s distress/happiness. He no longer can play cards with friends and even tv is a hit and miss with no undertanding of plots/stories or even remembering he has seen the same show the day before. He no longer interacts with family members based on feelings or interaction – just as to how they provide him with food/drink/etc.

He was diagnosed before the advent of the ABC drugs which may have delayed the progress, but would be ineffective now – we could not have afforded the 33% copay anyway….at $30K/yr. My working life has been cut short by 15 years (less into SS……) as hiring a caregiver would have cost more than I would have made working. He’s on medicare, but I have had no coverage since 2002 – $1200/mo premiums are more than I currently get in early SS. This is a disease of the family, not just the patient.

This healthcare system is worefully inadequate for those with chronic incurable long-term diseases that require 24/7 care.

Not all MS sufferes have problem dementia (10-40%) but most have some cognitive issues that need some help.

Losing all muscle strength, balance, bladder control, bowel control, sensations in limbs, tremors, appretite, vision issues, swallowing and speech problems are all bad enough but watching your loved one have dementia issues is heartwrenching and soul destroying.

July 1, 2012 at 11:04 pm
(6) Linda says:

Definitely the cognitive disfunction. I get other symptoms sporadically, but seeing my spelling and word retrieval deteriorate is very scary to me. Work knows about my MS, but I don’t talk about this part of it. I don’t want them watching me all the time to see if I can still do my work as well as before.

July 2, 2012 at 9:10 am
(7) Josh says:

My main fear now is of intellectual ‘fog’ as well. I do not want to become an image of the late Richard Pryor. That is my main fear.

July 2, 2012 at 12:48 pm
(8) Sara says:

I agree with most everyone: cognitive function is my biggest concern. I teach and don’t want anyone to think I am less capable. And really, sometimes I think part of my slight decline in recall time and memory has to do with age. I am over 40 now- so can’t I blame any of it on that? : )

July 3, 2012 at 12:11 am
(9) Marc says:

I have PPMS (or so they think), and PPMS folks generally don’t suffer from the cognitive stuff, at least not as commonly as sufferers of the other forms of the disease. I am most afraid of becoming a very conscious and active brain stuck in a prison of useless flesh and bones. Unfortunately, this seems to be the direction in which my disease is heading. PPMS is a cruel and aggressive son of a bitch, for which no disease modifying drugs exist. Dire straits, indeed.

July 3, 2012 at 12:45 pm
(10) Blair says:

At one point I was most afraid of the cognitive issues, but that part seems to have cleared since my CCSVI procedure. But….as I progress (SP and going on 15+ years) my biggest fear is not so much for myself but for my wife as I become less able to function and do things on my own. Already she has had to take on almost everything regarding the running of our home, well our entire lives really. I dread being a burden, or at least more of one than I am now. The part that makes me most angry is that we’ve been married 15 years and this started just 2 Weeks after our wedding. She didn’t sign up for this and I always worry that I’m having to put too much on her.

July 3, 2012 at 1:19 pm
(11) sarah says:

I’m 65, dx’d 12 yrs ago but probably should have been ten years before that. Physically I am only, mercifully, slightly debilitated with tingling and numbness in hands and fingers but fatigue is the worst and who knows if that is just my age? So my biggest fears are cognitive and I am always unsure if existing cognitive complains are age or MS or something else. Since I don’t know and one can go crazy trying to figure it out, I have decided long ago to try and ignore the fear (denial, maybe?) and just hope that “progress” remains slow. It my darkest days I can’t fight the fear but nobody who knows MS can do that. The best we can do for ourselves is be surrounded by love and understanding. It cures many ills, I think.

July 3, 2012 at 3:04 pm
(12) J W says:

Personally, I dread having to use a scooter and canes to get around, but my cognitive faculties slowly slipping away is painful. We try to joke about my attention span being equivalent to that of a gnat, but having the cognitive challanges on top of the physical limitations is devistating. We hear about procedures that may help SPMS and the cognitive issues associated with it, but we have no access to these procedures in Canada. Our only recourse at this time is drugs promoted by the pharmaseutical Co’s. Coincidentally , it was during a Trial Drug that I was on to help my condition from worsening, when I had an exaserbation severe enough that I required a scooter outdoors and canes indoors.The study was shut down shortly after my withdraw from the trial. Meanwhile, I’m being denied a procdeure (CCSVI) that has helped so many people in my condition. Cognitive improvement was one of the most common advantages. Yet (CCSVI) is being withheld for further studies and more and more expensive drugs are brought on line to fight of a disease that there not even sure that its Autoimmune.
I’ve had the diagnosis since 1987 and been on bike-a-thons and walks to raise money for a cure and after 25yrs of listening to Big Pharma and Neurologists I am a frontline skeptic when it comes to “Searching for Cures” while Pharma and MS docs make inflated incomes.
The only response I have at this time is, WTF!

July 3, 2012 at 4:00 pm
(13) judy says:

Even though friends appear to understand some of my limitations alongside of family, they really don’t get it and I can repeat myself 10 times over and they still look perplexed when I opt out on doing something. or when I ask for help. Fear is that when I really need hlep will anyone be there.

July 3, 2012 at 6:15 pm
(14) WIdawn says:

My biggest fear used to be blindness, I’ve had a number of bouts of optic neuritis and I can do without my legs but I don’t know if I can do without my eyes. These days the cog fog rears it’s head and sometimes that replaces my fear of blindness, I can still muddle along and many are unaware of the deterioration but I know, and my husband knows, and I wonder what we are going to do if it get’s worse. Already faced the financial fears and found we’ll plug along broke as well as we plugged along middle class. Just have to drive cars with 200,000 miles on them and enjoy our backyard instead of vacations.

July 4, 2012 at 11:01 am
(15) D Monroe says:

Currently most of my worries are financial. My husband has had cancer and is unable to work, I have to keep working for insurance coverage for the both of us, because I would be unable to pay for it otherwise. The copays alone are almost more than I can manage for both of our drugs together. So like an above posting, I have to keep working, I can’t slow up, I can’t take off when I am tired, I don’t have the funds for therapies and exercise programs that aren’t covered by my insurance.

July 4, 2012 at 11:03 am
(16) Laurie says:

Hi everyone,

The probability of physical decline, while upsetting, isn’t what “scares” me. No, what scares me is cognizant/mental decline. I don’t want to lose my mind.

Take care All

July 4, 2012 at 11:09 am
(17) Tom Martin says:

As my father did before me, I have PPMS. I took care of my Dad during and after my college years, and watched the rapid deterioration of his capabilities, both physical and mental. This was the late 1970s, and little was known about what was going on with his condition. It’s only been through my own studies that I’ve seen the connection.

In four years, this man went from a hulking steelworker to a shriveled old man who barely knew names and faces of his family. When I saw what was happening to him, (S)omething told me I was next, and around my 55th birthday, I was diagnosed with PPMS. I’ve seen the slow down in my cognitive abilities, so much so that I had to retire from my job. I can read, and still write creatively, and am enjoying it, but I know that the best I can hope for is a slow down in the break down.

To lose the joy of reading, and sharing those joys with others is not something I dread, for I accept it, but it still saddens me. BUT I”M NOT READY YET. So I’ve got some reading to do. Peace.

July 4, 2012 at 11:11 am
(18) Debbie says:

This is currently being discussed in the Patients Like Me forum. Most of the comments have also stated cognitive difficulties, which is what is my worst fear, since I had to quit work because of this problem.

July 4, 2012 at 11:18 am
(19) Faith says:

My #1 fear was to live with fatigue and being unstable to walk. It started months before being diagnosed and slowly got worse until 2008. Than #1 became #2 as cognitive deficits became my biggest fear. They worsen slowly as I seem it. Most I talk with don’t notice but my closer family does.

I try not to feel I’m less like me and less worthy. Those reactions are a real stuggle at times. Part of me knows I’m still the same whole person. There are times I definitely know I’m a better person than I was 15 years ago. In general, I’ve grown more aware, practicle, tolerant, and caring. I value that so I adapt and manage my life the best I can. I have no choices so I decided to be the best and happiest I can be for myself, and for those I love.

Since MS, I feel the word ‘love’ means more to me than I ever expected and I can share my love more. That became so evident with how I feel about my online MS friends. It does not matter if I meet them or not. I will always have a special bond and love with them. That takes away some of fears I feel with my cognitive issues too.

July 4, 2012 at 11:26 am
(20) IlliniMS says:

I find the idea of talking with either Romney highly ironic, and not the forum for MS patients.

True, Mrs. Romney has MS. However, with a multi-millionaire husband, absolutely no worries about the cost of medical insurance and/or treatment, access to top-of-the-line physicians, PLUS her husband’s willingness to remove even a possibility of affordable health care to the multitude of individuals with medical problems is disgusting.

Please avoid bringing in a political wife, with absolutely no relationship to those of us that struggle daily with MS in a way she could have NO identification with, simply based on her marriage status.

For that matter, please stay with MS topics and avoid bringing politics to this forum. Up until this today’s topic, I have found your discussions of assistance.

July 4, 2012 at 11:29 am
(21) Dee Dee Vickers says:

Dear MRs. Romney – Ann,

How wonderful for your fellow MS friends that you are being so open and talking about MS. This is the best thing that has ever happend for the disease of MS.. To have a beautiful, intelligent active lady such as yourself, talking so openly about MS is showing the world that having MS does not mean the end of your life as you have known it. It just means that some adjustments have to be made, some decisions have to be made, and then on with life. Yes, MS does present some obstacles that we have to overcome, but you are a wonderful example of someone who has done this so gracefully. I am so tired of people who say, “But, you look so good,” when they learn I have MS. People seem to think MS is going to alter who you really are. I have had MS since at least my mid 30′s, but was not diagnosed until of was 62 years old. The diagnosis came as a shock, but it certainly did give me answers to the things that had been going on in my body for 30 years.

I am a Romney supporter, and pray every day that you and Mitt will be moving into the White House. I pray for our nation and know that if Obama is re-elected, our nation will never survive another four years of his administration. I also know that to have such a wonderful, honest, beautiful First Lady, such as yourself, is going to be the very best thing that ever happend to those of us who live in the World of MS.
Thank you for all you have done, and are doing, and will continue to do for MS – not only in our country, but around the world.

Your Admirer and Supporter,
Dee Dee Taylor Vickers.
Georgetown, Texas 78633
deedee. vickers@suddenlink.net

July 4, 2012 at 12:26 pm
(22) darcy says:

As I’m celebrating an anniversary this month four years with this disease. My biggest fear was not being able to serve my country. I was in the Army when I was diagnosed. I served for a year and a half after this. The second biggest fear at the time was becoming Annette Funicello (SP).
Now my biggest fear is losing my eyesight this is where MS has reared it’s ugly head for me.

July 4, 2012 at 12:34 pm
(23) Karin says:

Having been struck with MS late in life, I am know 70, is that I may have to go into a home. Having mobility problems which are slowly getting worse I worry about loosing my independence. Having had cancer surgery in 2008 I was admitted to an extended care facility for five weeks, which I admit after loosing my husband this was the most depression situation in a very long time. What do we have in comen with Ann, other then the disease not much.

July 4, 2012 at 12:51 pm
(24) Carol says:

I was diagnosed December 2010. It made what was happening a lot more clear. More recently my neurologist said I have Progessive, relapsin/remitting. I never get a break from any of it.

My cognition is horrible. I lose my train of thought in the middle of a word. My memory stinks. I look at my family sometimes and can’t remember the name of who I’m looking at. I can tell you all about something, but not what it is or its name. Walking is even worse. I have no balance. My legs feel as though they weigh a ton. It’s so hard to pick them up and move them. I’ve been checking out scooters. Talk about a reality check!

My vision comes and goes – optic neuritis.
My speech is slurred. I sound like I’ve been on a bender.

I was a teacher. I gave that up because I’m afraid I’ll fall and scare the kids. I miss the kids and teaching.

My husband of 16 years did not sign up for this. That weighs on me a lot.

What am I afraid of? I fear most of being a burdern. I am 53 and feel like my grandma who had Alzhiemers and died in her 80s.

I still try to put on a happy face and carry on the best I can.

July 4, 2012 at 2:20 pm
(25) Derek says:

My biggest fear has always been the thought of going blind. I’m losing my vision slowly. The narrow ophthalmologist recently told me it may progress. Or it may not. So I ask him if I will go blind? He said no you won’t go blind but you won’t be able to see. So my response was will what is the difference. He explained to me about true blindness, lack of contrast, unable to tell different colors and a person who has absolutely no vision whatsoever.Going totally blind was always my biggest fear of MS. Although my fear seems to have subsided since I saw the I doctor. At least now I know I will be able to see. But just not see as good as I need to.

July 4, 2012 at 3:23 pm
(26) Carol says:

I am in my 60s, was diagnosed with RRMS about 3 years ago but probably have had it at least 30 years. I thought I knew I had MS about 5 years before I actually received the Dx. I wasn’t ready to receive the label.

I don’t like my decline in cognitive function – not being able to “pull out” the right word, lost spelling skills, and forgetting what I want to say. Then there’s the embarassment when I realize I just said something in a too-loud voice, especially when it is totally unrelated to the current discussion.

Then there’s my strange walking gait and running is a thing of the past. I can’t count on having a sense of balance. My feet may or may not go where they should. My legs may or may not work….Nothing new to many MSers. I know I’m not unique.

What bothers me the most though has to be a toss up between the ever-increasing cost of medicine and the burden all of it, the decline of my functionality and the financial drain, is on my husband and family – the guilt I feel. I’d love to be able to utilize physical therapy (horseback riding is a luxury in my book) to aid my walking, balance, etc. but PT is not free. My monthly meds (Rebif, etc) cost us thousands of dollars until I reached the catastrophic level. No one should be forced to choose between having the medicine they need and making their house payments but that’s our reality. And I’m told drug companies “need to recoup the cost of developing and testing [the medicine] …” Give me a break!

July 4, 2012 at 3:48 pm
(27) Carla A. says:

Blind…I am terrified of going blind. I can lose my mobility and I can lose my brain power….but to be blind and never again see my children, my husband and the beauty of this earth would devastate me.

July 4, 2012 at 4:11 pm
(28) Sharon 1220 says:

I think most of my problems are based in my cognitive disfunction. I have eating problems, because I can’t remember to take small bites and empty my mouth thoroughly before taking another bite. I can’t remember to walk slowly and take corners slowly, thus I bump into walls and tend to fall over on turning corners. As you can see, I also can’t remember how to spell.

I just turned 65. I have been having problems since I was in high school. My husband had a stroke and died two years later when I was 43. My daughter moved out five years later when she was 18. I was diagnosed at age 51, with probably primary progressive MS. I do have a couple of close friends I can depend on to drive me to doctor appointments and go in with me when I can’t remember what is going on. Usually, I drive myself anywhere I need to go.

I have to go it alone. My MS group is a fun group where I learn things about MS, but it’s not somewhere I can turn when I need things done. I live in a development of paired patio homes, so the grass is mowed and the snow is removed, but anything inside the house, I’m on my own to take care of. My daughter has moved into the other side of my home, but she’s has CFIDs and is exhausted when she gets home from work. My mother has Alzheimer’s and is in a nursing home, but I still have to take care of her bills and other paperwork.

July 4, 2012 at 4:39 pm
(29) louise says:

I was diagnosed in1997, but now realize I have suffered from this disease since my teens.
My first reaction upon diagnosis also was” I will be in a wheelchair”. Then the treatments with steroids, Avonex, Rebif. I have been a truck driver for 26 years, and had to give up my career, for the safety of others and my own.
I had the CCSVI procedure done in November of 2011, and the first results were positive, allowing to return to work. This did not last, and was forced to get of the road yet again. I now suffer from high blood pressure but, that is the price to pay I guess to take a chance, that thankfully a friend helped me, but I do have to repay this person that was so generous.
I guess the base line, is I am trying to live from day to day, and some days are very hard. Yes the depression gets to me, as does the pain, the fatigue, the “foggy” brain etc.
What really scares me now, is not being in a wheelchair, but finally realizing this is a chronic disease, and that scares me to death. Chronic scares me, but I will continue fighting as best I can, and will try to never give up.
If I were to loose my sight, well I could always listen to audio books. To loose the use of my arms would probably be the end of me. I still try to knit, and sew, if my hands cooperate, and my brain is not in a foggy state of mind.
Ms is not a great thing, but, in the long run, I think, it has tought me to fight, and this for as long as I can.
Thanks for reading.
An ex trucker, who really misses the road, but I am on a different road now.

July 4, 2012 at 4:47 pm
(30) Melanie says:

I had a first attack at age 30 but no diagnosis. 9 years later I had a second after moving to Boston and getting an MBA. I spent most of my childhood and early adulthood caring for a Mother who had Ulcerative Colitis. She is gone now, my father died when I was14, and there is no other family. Today I am wheelchairbound – 23 yrs wih MS

My worst fear is being put in a nursing home. I am alone, no family and aside from my church, no other support. I manage to stay at home because I receive help funded through Medicaid to hire home health aides–CNA’s. Without that help I could not live independently. There are millions of families across this country that need this kind of help for a loved one. It would save enormous costs to Medicare and Medicaid to keep people at home and out of nursing homes. Mr. Romney would save a lot money and lot of suffering by implementing plans like this nationwide.

When Mrs. Romney was first lady of Massachusetts for 4 years I never once heard her mention her MS. The New England Chapter of the MS Society jumped at the chance to have her on their Board. But aside from seeing a brief TV clip on her appearance at an MS walk, that was it. It is a personal decision for her to disclose. She is not your average working Mom struggling to raise a family while dealing with MS.

Anne Romney had the opportunity once before to discuss this. But to the public, she and her MS were invisible. I still talk to neighbors, friends, colleagues who live here. Few if any know she has MS to this day. Since I have firsthand knowledge of how she handled her MS as a first lady of MA. If he is elected I doubt very much will change. She will probably worsen from the stress. The federal prosecutor who fought to have Timothy McVeigh sentenced to death, Joseph Hartzler, told Barbara Walters in an interview that his MS did in fact deteriorate over the course of the trial.

July 4, 2012 at 6:12 pm
(31) Cleveland says:

I was just diagnosed in april of 2012 should have been in 2010,. Im scared of all of it! I think its the uncertainty of whats going to happen to me in the future. So far i take my injections as i am told im hoping this will really slow things dow. Im not sure whether my memory was shot before the ms or if its because of the ms. My short term memory is horrible. Im always misplacing things. I have to write everything down with reminders on my phone. My bf and mom helps me thank God. Im 35 with having to inject and worry for the rest of my life since there is no cure. Ive started exercising which has lowered my bp. im hoping it will help with everything else!

July 4, 2012 at 6:54 pm
(32) Margaret says:

I just had my 71st birthday and was diagnosed 3 years ago, although I’ve probably had MS since my 20′s when I first had optic neuritis. I was given steroids that cleared that up. I retired from a govt. job when I turned 55 because I had already worked 37 years and raised 3 children. I was an office manager and also took care of my home. I did work part-time to keep busy and travel the world. Thank God for a great husband who is retired and takes care of me now. I can still wallk with the help of a cane and/or a walker. The thing that scares me the most is if somethiing should happen to my hubby, who would help me? Kids grown and have their own lives to worry about. I have HMO for my medical needs. Again, thank God for that job that included health insurance into retirement.

July 4, 2012 at 8:05 pm
(33) Kim says:

Just because someone is rich and privileged doesn’t make this disease any less frightening. Neither does being married, or a democrat or a republican. I’m quite sure that Mrs. Romney has those dark moments just like the rest of us. We should all refrain from commenting on the situation of others that we know NOTHING about. As far as fear, I guess I’m the same as everyone else–loss of cognitive ability, as well as sight problems. So far-so good, and very little physical symptoms other than fatigue.

July 4, 2012 at 10:35 pm
(34) KIM says:

My biggest fear is the cognitive decline as I am a nurse and love my job so much. I really struggle at work to remember everything I need to do in the course of a day taking care of multiple patients. I live in daily fear that I will forget something that is crucial. I will quit nursing on that day.

July 4, 2012 at 11:48 pm
(35) Kim Hahn says:

Julie, you hit the nail on the head as to my greatest fear from MS and that is cognitive dysfunction. I was an RN for years and took care of a few MS patients in home health care and I HAVE seen severe cognitive changes and especially in a young women my age 20 years ago. Her personality changed drastically and she had wild mood swings from euphoria one moment to dissolving into tears in minutes. I have accepted my diagnosis and am very thankful to be a well as I am, but I am showing significant brain atrophy. My most fervent wish is to remain clear enough thinking to maintain my close relationship with God. I have prayed about this and I know that He knows me and my heart and I trust that He will keep me close to Him and able to pray even if I lose every other ability. I’m not worrying about it anymore, just counting my daily blessings which are considerably more than my reasons to complain. Thank you for your “ministry” to so many of us. Giving us information and support. Stay cool and be well this 4th of July!! Kim

July 5, 2012 at 8:57 am
(36) David says:

Like (3) ChicagoMS says, I too cannot disclose at work for fear of what my fellow workers would think.

My biggest fear? Increasing cognitive dysfunction.

I have PPMS. I am a computer systems programmer, responsible for highly technical work, with a need to communicate effectively. I was dx’d about 10 months ago, but should have gone to the doctor at least five years ago.

My short-term memory has suffered. My ability to communicate clearly has suffered, due to apparent loss of some vocabulary. My concentration levels have gone down.

All this is made worse by heat. Unfortunately, I live in MN where it’s been unusually hot and humid; as a result, I have been feeling more and more like a prisoner in my own air-conditioned home — I used to be a landscape photographer, spending a good deal of time in national parks, camping; now I can’t deal with that any more.

July 5, 2012 at 4:54 pm
(37) La-rie says:

Diagnosed in 1995 after living with optic neuritis and other undiagnosed symptoms for at least fifteen years before that, I believed I would not experience MS in its advanced forms. A severe relapse three years ago proved me wrong. Since then, peripheral neuropathy has made it difficult to dress myself and apply makeup. I fall more frequently, due to balance and foot drop challenges. I choke easily if not careful when swallowing. My inability to concentrate helps me empathize with challenges my husband experiences due to the ADHD with which he lives. Chronic pain, overwhelming fatigue, cognitive impairment, and an ongoing list of symptoms that have worsened since 2009 resulted in my going on disability this year. Neither of my two masters degrees, nor my doctorate, help at this point. I dread not being able to care for myself and be a contributing member of society, so I continue to volunteer when and where possible. Family and church members are blessedly supportive, and having a dog to walk and with whom to share affection is wonderful. Life still holds much for which to be very thankful!

July 5, 2012 at 6:39 pm
(38) Jerry says:

Like Judy stated above on July 3, Will anyone be there when I really need them. This disease has put a great strain on my marriage and our relationship. I sometimes feel like I’m in this alone and wonder if I’ll have someone who will truely understand what I’m going through as things get worse. All the normal aches and pains, balance issues, canes, MRI’s etc I can deal with but not having someone who really gets it is my scary thing.

July 5, 2012 at 10:07 pm
(39) Cindy Murphy says:

I was diagnosed in 2002, but believe I had my first attack in 1995. My fear right now is having to use a scooter or wheelchair to get around. Also up there is my cognitive faculties are slowly slipping away. I had to quit work 3 years ago because I couldn’t remember how to do my job after doing it for about 20 years.
I agree with IlliniMS. Ms. Romney will never know what we go through with the insurance companies and getting the tests and medicines we need.

July 6, 2012 at 10:48 am
(40) Tamara says:

My greatest fear is waking one morning and not being able to move. I take my medication as directed, I exercise, I write notes so my memory lapses do not affect my performance at work nor at home. But I just have this overwhelming fear that one morning, I’ll wake and not be able to move nor communicate to my husband what is wrong. I hate this feeling, the fear is constant and ever-present and seems to get stronger. I was diagnosed 4 years ago with a few flare-ups along the way, all of which I was able to bounce back, so to speak, but what if, one day I dont bounce back? What happens to my family? What happens to me?

July 6, 2012 at 2:51 pm
(41) Josh says:

My biggest fear is being able not to play with my kids and helping them play baseball. Also my most biggest fear is loosing the love of my life my wife. I have had MS for about 5 1/2 years and everything has just turned worse for me. My loving wife has been taking care of me for all these years but I know she is tired of taking care of everything on her own. Luckly I can still work full time but it doesn’t help her enough because I have so many medical bills that I can’t pay for. But I try my hardest to be the best Dad I can be for my boys. But it’s so hard to dowhen I think I’m the luckest guy on the planet to have such great kids that help me out everyday I need it. But my MS doctor keeps telling me it will get better but it doesn’t.
My family is my world and what would it be if I didn’t have them. My brothers just think I’m doing this because I don’t have a father figure in my life. I will always remember my Father because he was my hero and always will be. I lost my Dad when I was 18YRS old and I still see him to this day. I have talked to him and he always tells me to be strong for my boys. They say MS is not hard to live with but sometimes I have to say it is.

July 7, 2012 at 12:12 am
(42) Denise says:

My greatest fear is cognitive loss that has already begun. I realized it was getting bad when I left a burner on on the stove. I’ve been over drawn in my checking account 5-6 times. There have been several other incidents I could site. The fatigue has been awful. I feel like I am paralyzed by it. I am unable to do much of anything before I have to lay down and rest. I have filed for disability based on the cognitive and the fatigue problems. I am waiting for a decision from SS.

July 8, 2012 at 8:14 am
(43) murphy says:

Choking to death terrifies me most about MS.

July 8, 2012 at 11:11 am
(44) fear is my middle name says:

I have been diagnosed a year ago, and i am increasingly scared of everything related to MS…

July 10, 2012 at 1:53 pm
(45) shaydee5 says:

I was diagnosed with MS June 2006, although I know I had symptoms at least in 1995, and especially in 2002 when a neurologist said my MS hug symptom was signs of getting old. I was only 43.

I feel that I’m already gearing towards full-time wheelchair or scooter use. I can’t walk without a cane anymore, and may start using two canes soon. So I really have two fears. If I end up not being able to walk, it also may mean not being able to work, and then how do we survive? I can only keep up with all the healthcare costs because of my job’s health insurance. What will happen if that’s gone?

This leads to my second fear. I’ve been trying to find work closer to home to reduce the effort it takes to get to work. When I read the job requirements for jobs in my field, I realize that knowing what my current cognizant state is, I do not think I would be able to handle any of these jobs! MS already prevented me from completing my doctoral dissertation — I couldn’t stay focused and couldn’t maintain a logical train of thought anymore. If I were to find a new job, maybe I’d be fired for not being able to do the job. And any thought of travel for work would be out of the question.

I’m going to keep working for as long as I can because I think it’s the only thing that keeps my mind active, which I think you have to do to fight off complete brain fog for as long as possible. But it sometimes feels like pushing a boulder uphill, both literally and figuratively.

July 12, 2012 at 11:00 pm
(46) Kim Winters says:

The decline in cognitive function is what I fear the most. I am a nurse and I love my job so much! I have to work very hard at work to stay on track and remember everything I need to do to take care of multiple patients. I forget things all the time and hate it how it makes me look incompetent. On very busy days I can feel myself start to “fuzz out”, I feel like I am working in a big pile of cotton balls and nothing is clear. So I end up talking to myself all the time to remember what I need to do.,and I know I don’t interact with my co-workers some days because I am putting so much effort into staying on track. I am not sure how much longer I can keep working as a nurse. At home my family helps me out and i vacillate between laughing about my rotten memory and being angry because I feel so not in control of my life. I understand that I will have to move thru the anger and find a coping skill to replace the anger-but I am not there yet!

July 14, 2012 at 5:28 am
(47) Catherine says:

I was diagnosed with ms in 2002. I am scared of all of the possibilities – just as everyone else has posted. However, one concern of mine (which may sound trivial in comparison to the physical symptoms) is that I will never get married. I am currently 35. It is really hard to date people and explain to them that I have ms. Also, I don’t really feel fair dating anyone. I feel like I am asking too much of someone that I barely know. It doesn’t seem fair.

July 14, 2012 at 4:25 pm
(48) Adelissa says:

Like another poster mentioned, my number 1 fear is being unable to take care of my daughter and losing her to foster care. I have no family or close friends to help me. She is 9 so I need to be strong until she is at least 18, preferably 21 (I am 32 btw) and I don’t mean to sound like a martyr or anything but I have had a good life and I was blessed to be able to find joy in the little things so I don’t think anything about MS would just destroy me but that above. The next would be blindness and Quadriplegia. I have a billion hobbies that would make my life full but if I couldn’t read or use a computer life would be pretty empty for me. I actually haven’t been formally diagnosed but I have a lot of symptoms that are consistent with MS and my doctor told me truthfully when I explained my symptoms that MS was her first guess.

July 23, 2012 at 12:09 pm
(49) Astrid says:

I was diagnosed in 1987 after my 2nd child. It was after I finished college. I had been married 6yrs, and now had two girls. My career was just beginning. I had another girl and stopped working. I am now wheelchair dependent. I now use tysabri; I am having positive results with it.

July 26, 2012 at 7:02 am
(50) DRussell says:

I am most afraid of being bedridden in a hospital or nursing home being kept alive with catheters, breathing and feeding tubes, colostomy bags, etc…seeing my family suffer too. I was dx’d in 2010 with SPMS and in 2 short years I have so many symptoms I can’t repeat or I will take up too much space here. I feel that I am looking at a wheelchair by Christmas.

My neuro told me my progression is not “average”, that I am progressing much faster than “average”. but here is my reason for writing- I wish I didn’t know what I know about MS! I wish I didn’t know that I will progress to being bedridden. I wish I didn’t know that suicide is one of the 3 major reasons that MSer’s die. I wish I didn’t read that article posted about the woman in an electric wheelchair who lived with MS for 20+ years only to drive her chair off a cliff. It made me wonder if I will get to that point soon. I wish I didn’t know any of this. ignorance is bliss for me. a major Boston, MA hospital suspected MS in me way back in 2001, but never followed up on it. so, 11 yrs later I have what I have. I never had any big symptoms, only one at a time very spaced out, so it was never put together. not until my “tardive diskenisha” (sp?) started getting worse years after I stopped the med that they thought was causing my foot to jump.
I hate MS and MS hates me. I went through all the grief stages already, but I have come full circle to the beginning since I know what I know. I just wish I didn’t know so much.

July 26, 2012 at 1:36 pm
(51) Shelley Drnek says:

Loss of my COGNITION frustrates me the most! There are days I find myself in tears when I become so confused about minor things, like working with numbers. I can no longer quilt because working with “all those colored fabrics and sizes” terribly confuses me. I’ve taken up knitting but find that I can only knit the least complicated pattern, and that is knit, purl, knit, purl! I have ripped out project after project because of finding errors. I can no longer keep track of what I have just read if I set the book down. I use to be an avid quilter and reader. So, now I rely on my computer to play “brain games”! This isn’t what I had imagined for my life!!! I also TRULY miss being able to play with my grandsons who have come into my life since having MS. They are 6, 8 and 2. They probably think Grandma is boring!

July 27, 2012 at 12:40 pm
(52) Jason says:

For me it’s the unknown. Not knowing if my legs will work when I wake up in the morning or if I can survive a day at work. Or not knowing if my mind will fail me. Or not knowing if my body will fail me any more than it already has. Just not knowing is my biggest fear.

August 9, 2012 at 8:30 pm
(53) chuck says:

some times i know im sick, used to wall walking. i forget my mind says take a step, but my body says no then i end up on the ground. then i look stupid

August 10, 2012 at 10:22 am
(54) Alex says:

Hi everyone,

Would you care to answer this short survey about the above and treatment today. Maximum 3-5 minutes of your time would be needed.



August 17, 2012 at 4:15 am
(55) Britni says:

I am no longer scared of being in a wheelchair either. I have come to terms that, that is a possibility. Especially since I have began to have difficulties walking and just purchased a cane. My biggest fears now are being permanantely wheelchair bound and/or blind.

August 29, 2012 at 10:43 pm
(56) Leigh Anne Wauford says:

I am 44 years old- my mother was dx with PPMS right after I was born. We had to put her in a nursing home at the age of 55. She passed away at the age of 69…I was dx with RRMS 15 years ago. Truthfully, I have been very blessed, but this year I have already had 2 relapses- and am on my second bout of steroids.Stopped taking Copaxone 3 years ago b/c I was doing so well. BUT have recently started having vision problems, and like many of you, I started having the cognitive decline last year. I am deathly afraid of being disabled and being trapped in a body while my mind is still sharp- that’s how my mom was for the most part. My cognitive issues have been with word recall, memory, knowing what I want to say and hearing it in my head- but the words are never voiced so others look at me like I’m losing my mind! My neurologist has put me on Ritalin- 10 mg LA- and it has made a HUGE difference!!! would recommend it highly!! I am still able to work FT and keep doing what I need to do- positive attitude goes a long way, but this Rx was just what I needed to dispel my fears and help the cognitive issues.

God speed and good health to you all…

~Leigh Anne

November 23, 2012 at 1:42 pm
(57) Alison says:

I am scared of it all. I don’t want to change. I want to thrive… not just survive. I dont want to be a burden to my husband. I want to be a great mom and grandmother and aunt. I do not want to look sick, feel sick or be sick. i dont want to have MS.

December 16, 2012 at 4:59 pm
(58) Pete says:

I can’t find a doctor with the compassion to treat a person with myriad symptoms, as a person deserving of compassion, rather than a person who to them is obviously a mental patient in waiting. I havn’t been able to get an appt. with a Neuro in less that 5-8 months, so seeing them during an attack (when my thinking and all else is at the worst) is impossible. With my legs jumping in front of the neuro’s eyes, she still refused to accept that this is MS, but rather Diabetic neuropathy. They refuse to do a lumbar puncture, or MRI my spine, since the brain orbit and ocular stem are devoid of key MS signs. I live with a sensitivity to heat, so bad, that I sleep with a fan in the winter, entry doors ajar, that fog 90% of the time, and such difficulty walking due to the spasms/cramping, just plain lack of muscle coordination. This is common after sitting/laying a while, or after walking for 50 yards or so. I have the entire laundry list of symptoms, they are unrelenting, yet the idiots I have seen maintain this is Diabetic neuropathy, in spite of spasms/pain throughout my body(including my chest and abdomen, shoulders, hips, arms face and hands). I have facial paralysis from Bell’s palsy, which substantiates my claims about facial ticks, numbness, eye pain, and pain in my jaws, neck, and the bone behind my ears. Chief among my fears is the loss of my ability to speak, and think, and remember people. I pray that I will retain my ability to walk at least long enough to walk my daughter down the aisle. I hope that complications don’t take me too soon, not for my sake but since my pension, and social security will lapse when I die.
As I try to sleep through the cramping, muscle jerking, screams of pain, I find myself wishing just to be able to quietly endure my torture. Maybe my greatest fear, is I never get a dx, and that they find a drug to combat further nerve/muscle control loss, and I can’t get it because I have no dx. My biggest fear? Idiot Doctors.

December 19, 2012 at 11:48 am
(59) rick says:

Diagnosed in 1972, hospitalized four times, remission for 29 years, hit again 1999, slowly progressive since probably 2010, currently daily progression although extrermely subtle, balance, stamina, 20% loss of IQ/short term memory, long term is fine.
Fat & gluten free diet adhered to, low dose naltrexone 5mg dailey, still ambulatory with concentration, bowels fine, eyes crossed down, up is fine, some numbness at extremities but not problematic.

December 19, 2012 at 11:52 am
(60) AmberTia says:

Great show called “Betty White’s Off Their Rockers”. I have had MS for 30 years and only last five or so years has it been a real hassle. Betty White, at 90, pranks the younger generation with oddities attributed to the old. I am now following suit with MS even if it’s my own little pranks. Today I was on a very long line at check out with only one person working. I yelled from the back “Can you please open another register. I have MS and if I don’t get through soon you are going to have to clean up after me”. Blam. Another register opened immediately. Got some crazy looks but I don’t care anymore. My biggest fear: not being capable of making my own decisions about my life. Then, yes, I too will throw myself off the cliff.

December 19, 2012 at 12:32 pm
(61) DRussell says:

I have a progressive type of MS. I am most afraid of being all crumpled up from spasticity with a foley bag and catheter, being a burden to my husband and being felt sorry for by everyone else. I am most afraid that if I head in that direction, I will do what I have read about: 3 major things that cause death in MS- pneumonia, aspiration and suicide. what makes this disease so bad that a victim would choose suicide?

December 19, 2012 at 1:05 pm
(62) Brooks Bloomfield, DVM says:

Discovering your MS diagnosis was wrong and that you have Multiple System Atrophy instead:) I would give anything right now to have MS and watch my daughter grow up. MS stinks and neither Ann Romney nor Jack O really have a clue. Just found out that the health insurance I have had for 30 years is going out of business due to the affordable care act. I have no opinion on it as it makes no real sense yet but I do have the letter telling me that just when I get to the really bad part of my disease I will have no insurance coverage and will be dependent on what is left of social security and medicare. Be careful people. The world is not what it seems and the doctors genuinely do not have a clue! All they want is money like everyone else right now. Look out for yourself and inform yourself. Read anatomy texts and understand how your body works. Most doctors do not! They are very narrow and limited in their knowledge of the entire body. Your neuro hasn’t a clue as to what it feels like to be you! Trust them but question them!

Best to you all for the happiest, healthiest, most comfortable lives you can have. Be strong! Love!

December 19, 2012 at 2:11 pm
(63) Elaine Schloeder says:

Dear Ann,

Keeping in mind that everyone is so different, it would be so helpful if you would take the time to share your journey with MS. What symptoms you had, how the doctors came to diagnose it, and what modalities of treatment you have undergone–which you have found helpful and those you did not. So many of MS suffers have little or no means to explore differing diagnoses, never mind have the will or money left to get specific treatment if that process could somehow be streamlined for them and some of the stumbling blocks removed–what a blessing that would provide.

You also seem to have explored less traditional modalities like your interaction with horses and have declared its efficacy for you in dealing with your own MS. More and more these areas have proved to provide a distinct benefit as to more lasting and less expensive (at least in the long run) thereby more valuable.

December 19, 2012 at 2:19 pm
(64) Rentia Victor says:

my eyesight is very bad at the moment, so yes def the blindness…

December 19, 2012 at 5:00 pm
(65) Cathy says:

I do sometimes get scared. Two weeks ago my MS neurologist told me she thought I needed a walker. Before that she had always said my mobility would be OK. My response is to start doing stretches and trying to walk without my cane. Like many others, I am doing without PT because of cost. I think I will be able to start in January, because then I can do the deductible and get some reimbursement of expenses. Money is always a BIG concern. Not being able to work frightens me a lot. In some ways though, probably because I have been diagnosed for about 30 years, I have gotten tired of being scared. You don’t know what is going to come. So far a lot has, but so far I have been able to cope (most) of the time. Have to assume I can cope in the future. Being scared doesn’t help and can end up being worse than having the disease.

December 19, 2012 at 6:14 pm
(66) Marsha says:

my speech was my problem because whenever something needs to be told people look to me to do it, now when i say the wrong thing they call it marshaeze…good gropup helping me to cope

December 19, 2012 at 11:00 pm
(67) Debra says:

My biggest fear is loosing my sight. My neice has a friend who was dx with ms and she could not see for a while, this could be permanent and that would be horrible.

December 20, 2012 at 10:58 am
(68) DRussell says:

this may not be the appropriate forum, but this is to Brooks Bloomfield, DVM- my heart goes out to you! I was very afraid of that diagnosis also, but I am lucky in that it is MS. I will keep you in my prayers. I know research is being done for that disease also, so don’t give up hope! Love to you and your family,

December 20, 2012 at 11:12 am
(69) Lynn Smith says:

My biggest fear with my M.S. is the thought of my future as a totally disabled person. I want to be able to always swallow my food after I feed myself using all the utensils necessary. I want to be capable of walking outside or even inside. Smelling my Christmas Tree, Hugging all of my family members, viewing the snow falling from the sky , and laughing each and every day.

December 20, 2012 at 1:58 pm
(70) Pamela says:

I am horrified of losing physical control with cognitive issues not being a problem. I see it happening now and have a very difficult time dealing with it.

December 21, 2012 at 3:22 am
(71) SVEND-ERIK says:

I hate the MS, no matter what kind, its destroying me,
how long time before a cure ?
Anyway merry christmas and a hopefully better new year

December 21, 2012 at 11:06 am
(72) Paula says:

My greatest fear is that the brain disfunction will continue to get to the point I am unable to care for myself. I now currently have dementia from the cognitive disfunction and I am taking things one day at a time as this all plays out. I am scared and living my life day at a time. I am finally on bipolar meds and am feeling more like myself than I have in years.

May 24, 2013 at 11:15 pm
(73) Patrick says:

I was diagnosed with Remitting Recurring Tumefactive Multiple Sclerosis and since having been diagnosed, lost my job, had to cash out my retirement savings in order to keep our home while fighting for SSDI, and had to file bankruptcy. The SSDI I’m receiving isn’t enough to cover our basic household expenses, yet alone save anything or pay for our children’s college expenses. So what scares me the most is the loss of my finically future and independence. I hate this disease and what it’s stolen from me and my family. I get tired of all these positive stories in the MS magazines where they tell these stories of people traveling the country and enjoying life. Where the hell are the real stories about people like me and the others I’ve meet who have lost there homes because of this damn disease. Yes the symptoms royally suck and can be extremely debilitating, and humiliating. I can honestly say that although I have no intentions on taking my life, I have no fear of death because it would bring an end to my misery and suffering.

May 30, 2013 at 12:42 am
(74) Keith says:

It’s pretty interesting. I was diagnosed very young (14 with my first symptoms being when I was 13) and I think for all through high school and college, while

June 19, 2013 at 11:04 am
(75) Brenda says:

Right now my biggest concern is being alone and waking up one morning unable to move. I have many mornings where my left side is tight and hard to move but I can do it. I recently seperated from my husband who was not particularly helpful with my MS but at least there was someone there to call 911 or could arrange to get me to the Dr. I am 56 and this is the first time ever that I have lived completely alone. I like it but it can be scary if I allow myself to think about it. All of my other symptoms I have learned to live with.

June 19, 2013 at 1:03 pm
(76) Bridget523 says:

To ChicagoMS.: I have your same fears with those symptoms. My last full time job found out and suddendly I was not a good worker anymore. My supervisor told me (behind closed doors) He was used to people “running to his office and running back to complete the task” Yes he said running. I then was wearing a AFO brace. I told him I had not run in at least 5 years. I then got a letter to voluntarily resign or be fired. What about horse riding to keep your balance?

June 19, 2013 at 2:11 pm
(77) Carol says:

I had MS symptoms for well over 14 years, before I was diagnosed with MS. I was diagnosed with MS in the fall of 2005 and immediately started Copaxone, totally changed my diet and eating habits and started taking all sorts of supplements. I am now 56 and all of my subsequent MRI’s have been very positive and I have not had a relapse in almost six years. Yes, I live with the numerous symptoms most of us have with MS. However, my greatest fear, has always been loss of cognitive skills. My most recent MRI in December 2012 showed no new lesions, less inflammation and as my neurologist said, “no signs of active disease”. Now all that stuff was the best Christmas present I could receive but the best part was “no sign of brain atrophy”. I was and still am elated that after all these years of having MS, I have no brain atrophy. I was a social worker for over 15 years and the individuals on my caseload had numerous, very serious diagnoses. However, the individuals that had the most difficulties living a “normal” life, were the individuals with Traumatic Brain Injury (TBI) and/or Acquired Brain Injury (ABI). I knew from many, many years as a social worker, just how devastating brain injuries can be. I guess I still have a slight fear regarding this issue but my neurologist is pretty positive that if it has not happened yet, it probably will never happen.

June 19, 2013 at 2:23 pm
(78) Jerry Denick says:

I hate having this disease.. The symptoms are always changing. Sometimes I have some strength. Sometimes I don’t. Sometimes, etc. It is always changing my physical abiities. I wish the medical establishment solved this MS quagmire for all of us, forever.

June 19, 2013 at 3:51 pm
(79) ireneg says:

I knew nothing about MS until I was diagnosed at age 66. Upon diagnosis, I read anything and everything I could. A lot of it scared me. The scariest was the possibility of cognitive decline. I was in graduate school finishing with a terminal degree at age 62. I worked as an educator and was proud of my creativity and quick thinking. Almost four years later, there has been no cognitive decline that I am aware of. I exercise my brain as much as I can, using Lumosity, Word for Friends, Hanging with Friends, and Sudoku. I read voraciously. I have taken lessened mobility and bladder difficulties in stride. Those things do not change who I am. Losing cognition could end up taking away my identity.

June 20, 2013 at 12:27 am
(80) Prabir Paul says:

Dear ALL

I was diagnosed 6 years ago. It should have been diagnosed about 15 years ago, but there was no acute attack, since year 2007 it was 1st attcak as optic neuritis & lower abdomen sensation problem. At any rate, vision, balance, bladder, numbness, tingling, and fatigue are my major issues right now. 3 time acute attack including 2 time ON
since year March-2009 to till date ther is no further attack & latest MRI report shown better comparision to earlier MRI report & LP report.

June 24, 2013 at 7:26 pm
(81) Joy says:

My biggest fear about MS has been becoming incontinent, not being able to clean myself or clean up after myself.

August 4, 2013 at 12:26 pm
(82) Bonnie says:

Please read the Lotus Sutra interpreted by Nichiren Daishonin, best English translation by Burton Watson, it shows a different way at looking at life. You can find it on the internet.

August 19, 2013 at 7:40 pm
(83) brian says:

Hi everyone. I a 42 year old, father of a 2 year old. I am scared of not being able to provide for my family. I am scared my wife and son are going to watch me be tortured before I die. I am scared my son will get MS. I have suffered from depression my whole life and it has reached an unbearable level. I fear it will lead me to suicide. What is more beneficial? Being a guardian angel over my wife and son, or making a feeble attempt at being a husband/ father while suffering like I am? Maybe suicide makes the most sense. If MS is my firing squad, I ask it to shoot straight and not make a bloody mess out of me. Don’t torture me in front of my son. You can kill me but do it quick.

September 4, 2013 at 10:47 am
(84) Austin says:

I’m 24 years old and just recently started experiencing symptoms of MS in my legs. Saying i’m scared of what the future holds would be an understatement. I have another auto-immune disease, alopecia, so i’m wondering if the two are linked? Either way, i’ll always try and stay positive! I’ve been too blessed in other aspects of my life.

September 18, 2013 at 9:34 am
(85) Babs L says:

I hope medical discoveries will soon alleviate your suffering.
How do doctors know if it is MS, or just getting old, or worse if both, that affects memory? (If young, it’s a stupid query.)
I mean no disrespect.
Most think MS is progressive loss of muscle function = wheelchair.
Media campaigns shd be run to inform everyone about MS.
‘Home & Away’ could easily incorporate a storyline for a character with MS by way of informing the public – to better understand what is involved from onset. They have tackled medical issues like alcoholism and once tried pre-Huntington’s worry but did not follow HD’s entire gamut. MS shd be an easy storyline for H&A to do and it wld serve the public well to be better informed.

Is there an MS ‘Laughing’ group? Laughing groups meet once a week purely to laugh out loud for no apparent reason. It’s a fun, interesting & great way to exercise, and share. Perhaps it cld be followed up.

Good Luck & keep yr chin up – it could be worse – you cld have HD like me.

February 27, 2014 at 4:25 am
(86) namealreadytaken says:

My greatest fear is meeting people who have already checked out of life; some of whom I see posting here. I was diagnosed more than 20 years ago. I worked hard and lost the ability to work. I worked hard to regain it. I have one eye that I see from. I close the bad eye and work with the good eye. I have worked from a wheelchair, but I resent anyone those who argue that another person has it better or worse. I feel that Annette Funicello, who was diagnosed at about the same time as I was,did all she could to help those who had less than she had, just as Ms. Romney has done. Unlike ChicagoMS, I diid not resent Annette Funicello, Ms. Romney or Michelle Obama’s father. I am my own person and I have learned that if a person fights, they can be proud of what they achieve. I educated my 3 sons from a wheelchair part of the time and with one eye the rest of the time. I appreciate that we have 2 doctorate degrees and 4 masters and my own college degree in those 20+ years. So grab yourself by your boot straps, call on the man upstairs to give you a hand and quit whining about those who have more than you. Life is not always fair but it is better than the alternative. My cognition is no where as good as it once was and I had an MRI recently proving that, but damned if I give up the fight and move to Chicago.

April 4, 2014 at 8:06 am
(87) Todd says:

SPMS. Had most everything mentioned. Around 4 years ago got hearing loss, tinnitus AND psoriasis all at the same time and had to quit interactive lectures (teaching) and consulting. My suspicion was a lesson developing in my cortex. Docs didn’t think it so. But too much coincidence in timing for me. Got a great book called “Tinnitus Retraining Therapy” that told of research in the late 80s, long after all my neurologists graduated, that revealed the auditory nerve comes into the cortex the same place the (involuntary) signals originate that regulate skin maintenance. Though much of the research has been challenged, I lived through these two digressions and an MRI proved me correct (!!).
Localized narrowband UV Tx and a Widex 330 HA addressed those symptoms quite well. But I’m here to tell you all that loss of hearing is far worse than loss of vision. So the latter is not as bad as you might think. And IV steroids are (were, at least for me) very effective in resolving sight restoration. Now I fear my gradual loss of mobility as much as the cognitive issues.

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