Things Your Doctor Didn’t Tell You About Living with MS

Would like to pass this along. I had botox injected into my bladder because I was suffering from incontinence. I tried countless medication but none worked. So happy because it is working and I can go out if just to the store and not worry about having an accident. I can thank God because I would not leave the house unless I pretty much had a diaper on.

There is an online support group called Patientslikeme.com that is a source of information, dialogue between patients, positive input, research and more. I joined to have some fellowship. It's completely free. I joined a DNA/blood study that is tracking the commonalities of what they find to pass data onto researchers. I have MS and Type2 Diabetes and more and it's been good support.

Hi.. thx great article. Living with MS for 40 years.. I was 18.. I have learned. Lol.. a few things. Positivity is major, I have found that living life as happy and normal or what I call..my normal is #1. I research but with a grain of salt and logic.. I listen to my body.. eat well.. enjoy life ..love to teach aquafit. I volunteer at the YMCA. I too have a wonderful husband of 35 years..family, friends, social so important. My therapy for the last 4 years is Tecifedera.. before that copaxone..before that avonex.. Linda

Thankyou Ed, I can totally relate to everything you have written literally. I've had MSRR 15 years now...and through my own experience..I unfortunately have lost all my friends along the way ? this unpredictable and incredibly cruel illness is terribly isolating..and makes you feel so alone. Others need to try to remember MS is only a part of us and doesn't define who we are. I'm 41 years old and feel so old before my time. Kind regards

I wish I would have known how others were going to act around me. I do feel alone most of the time. People act like it contagious and don’t talk to you. You get left out of many things. Fortunately my husband helps me quite a bit.

I didn't even have to see who wrote this to know it was you Ed. I hope all is well. I agree with your review. I have also heard that treatment side effects can be worse than the disease itself. #MSWarrior #MaxiMS

I am part of the group We're F**ckin MS Warriors. They helped me when i was lost. Been part of my life for almost 2years. Love my MS family.

Thank you for the article. Before my cognitive decline worsened, I was a university English professor, which requires peak intellectual performance. I retired when my weakened intellectual faculties made it necessary. What I've found difficult is that healthy friends whose income is more dependent on physical abilities (massage therapist and hair stylist) and who still see me as "smarter" than they are, cannot grasp that I really do have this life-altering disability. One even went so far as to forcefully declare, "You are a healthy, able-bodied person," indicating that she thinks I am exaggerating the extent of my disability. Losing 20% of my cognitive abilities is devastating for me, and I would have been better off in a wheelchair, strange as that might sound, than with this particular set of cognitive symptoms combined with non-stop lassitude.

Never say i have m.s i have learnt.. positive mind is the best form of any chronic illness. Im 44 and was diagnosed at 29. I work fulltime nightshift and study time. I have a 10yr old son. My left side is numb and im blind in my right eye. To look at me i am normal. I battle each day but you would never know. I have trained my husband never to ask me how im feeling as i live a crazy life with little sleep he knows when im having a bad day and he will put in an effort to help me. Other than that i train my brain to juat cope.. when life throws you curve balls you learn to go around.. dont let m.s rule your life you be your own ruler.. i like to call it my Mega Sexy disease. Never stop living your lives.. love to all of those battling with a chronic illness

Hi Everyone,
I was diagnosed last March. The new MRI's are amazing, that they found lesions up & down my spine, I understand, that it is hard to diagnose. Your words, and encouragement help me try to cope. Not knowing for for 30 some years and just turning, now 50, was relief at first and now fighting sadness and fatigue. I first tried Copaxone, soon to try Tecfidera. I am hopeful, yet compelled to read everything. I am learning.
Thank you all Warriors, Fight On...
Blessings,
Lisa C

Thank you Melissa for sharing. I had to accept my cognitive decline and know when to leave my much loved career as a nurse. Needless to say, safety for others was monumental in my decision. Very very hard to leave the workplace, the job I occupied at the time was taking care of our active duty men and women who are serving our country. God Bless and watch over them all, they need our support too. Now i try to find ways to simplify my life and ease my mind. That in itself seems to be my new full time job.
Life spins on dime and i just really wanted my full dimes worth before i ended the career, ha!! Its okay, just a new journey started.
Thanks, Susie

I was diagnosed MS before 5 years. Now I am 40. Left side is numb with much walking difficulty. I have been working in a bank. Hence there is much stress. I had taken avonex for two years. Now Dimegen is my medicine.

"Unfortunately, there’s a lot of misinformation about MS floating around online," you say absolutely correctly. So often I wish there could be a bullsh!t-detector online, and not just about MS but about anything medical or scientific, but it could just as soon be turned upside-down.

I've been dealing with this for a decade now, and I'm running out of energy to fight it. Whether or not there's a cure for it next week or next month or next year, I'm not much likely to see any improvement in my own being. Seeing all of these warriors online is good for those who find good energy in taking part, but I am sick and tired of being sick and tired, and I'd like nothing better than to call it quits. Truthfully, I am not going to do anything about that, but the reason is more cultural than personal.

At any rate, reading your column here does give me tastes of hope, so thank you for writing it.

Best,
Gale.

I needed to read this article today, so thank you Mr. Tobias! Although I'm familiar with everything MS can bring, it still cuts like a knife sometimes. I feel like a spectator in my own life, and that eats at my soul more than I care to admit.

I really love your insight Ed! I just turned 60 and was diagnosed at 29. Everyone makes their own choices and for what it is worth, here is insight on mine:
I do not share that I have MS with anyone, except family and a few close friends. It works for me.
No one at work knows it and I like it that way. No discrimination.
I use a knee walker to get around. I can get to meetings at work quickly and it provides a means of exercise.
I work from 8 to 5. I used to work longer, but wanted quality. I do read up on MS news as much as I can.
I have a supportive spouse. I do stay positive. The glass is half full and a majority of people have worse health issues that I do.
My advice to people with mobility issues: try a knee walker.
One other insight: of you like to travel, try Sage Travel. My husband and travelled to Europe and they made it easy!

I love this article. A great read. I haven't told very many people about my MS, just family and close friends. Although, I feel like I probably will have to tell more people in time. I find myself obsessively researching this disease as I would worry about the future. I was diagnosed four years ago. Was very tired in the beginning. It was excruciating. I have since made some huge lifestyle changes, new job, better working hours. I eat very clean, which I believe has made a huge difference. I exercise every other day and try to live a stress free life. I'm not on DMDs but they terrify me.