I thought MS would be less of a problem with age but not me

[Hickory]

I am not sure that 15677charlesct's doc knows what he is talking about. Dormant due to age? Oh sure, that and a buck fifty will get you a cup of coffee.

Symptoms will regress for a period of time in all MS patients but then flares will reappear when they darn well please. Age has no bearing on it. Meds can slow down the time frame between flares but not eliminated them.

My understanding of MS is that you can expect the unexpected. There are no norms to MS, as each case is different. You cannot compare yourself with another person.

[penkalet]

When I got dx with rrms in august ( I am 62 ) the neurologist told me to not worry too much because with age MS progression will slowdown!
So yesterday I saw my MS specialist and asked him about it . And he told me yes! but not before you are in your eighties and so you still have 20 years to manage !!
If you want to know more, there is a good tele-cast at: mscast.net. Choose the one from Gareth Parry, MD . Subject: Indicators as a Guide to the Early Treatment of MS . He talks about all the factors to consider when trying to see the future!!?. Good luck to you.

[DianeD]

Originally Posted by Hickory

I am not sure that 15677charlesct's doc knows what he is talking about. Dormant due to age? Oh sure, that and a buck fifty will get you a cup of coffee.

Symptoms will regress for a period of time in all MS patients but then flares will reappear when they darn well please. Age has no bearing on it. Meds can slow down the time frame between flares but not eliminated them.

My understanding of MS is that you can expect the unexpected. There are no norms to MS, as each case is different. You cannot compare yourself with another person.

I do agree you cannot compare yourself with another as a means to measure your own disease. The most frustrating thing to me is that so many people do compare you to others they know! Like 'gee, I know someone with MS and they are doing fine'. OMG that frustrates me. I get irked and say 'good for them, I'm not!'.

Half the time they confuse MS with other diseases.

I no longer care; I just go along as best I can. I tell people I feel like a dishrag (when I do) and for them to please go on with their plans while I go on with mine :-)

I've learned to find my own joy in things.

[Ticker]

I have always had a milder problem with ms except for my bladder and cognitive dysfunction but in my late fifties my relapses got so mild that I can hardly know when they are happening. However the bad side is I came down with lupus right about that time.

If it's not one thing it is another as they say.

[JudyS]

I feel many days that I am getting worse also. This disease is so confusing, many days i do not know what to think. I do know I am better in the am, so I plan my shopping and stuff then. I try to do what I can, get dd or dh to drive me if I go far or at night, and they are both very helpful.
Took dd and grandaughter to the Nutcracker last Sunday afternoon. It was fun and since it was matinee, we were all awake. DD is pregnant so she understands if I have to go to the bathroom alot, so it all works out.
Do something for yourself that makes you feel good and try to find your good times.
Hang in there, i feel we are all gojng downhill at our age.
JudyS

[KarenMarie]

I heard the story from my neuro that I would be stable as I was in my 60's - a month after I heard that my mom died and it's been downhill ever since - and I've been through a year of C - didn't help at all - now trying LDN for almost a year - hasn't helped but at least I think I'm doing something to try to stay on my feet !!

[SwedishPrince]

I was dx last October (age 62) and the neuro said that there are typically no "attacks" beyond age 68 but that the disease is still there and continues. Not sure those two things really make sense, but that's what he said. I read somewhere on the Internet that initial on-set in older people is more aggressive, but "on-set" seems to generally not be the same as "diagnosis" -- seems like by the time any of us actually get the MS label, we've really had it lurking and/or popping out for some years.

[MSDO106964]

I'm 64 and haven't been diagnosed yet but have many of the usual symptoms. Have a flare up seven years ago and then was fine until the first of this year. Beginning in January I've had so many sx including what is just driving me bonkers right now and that is terrible muscle spasms in my back at night. PCP gave me Flexeril which just knocks the heck out of me. Waiting to see neuro end of this month for results of tests. Hearing the horror stories about DMD's make me wonder if I want to even go with treatment at this late stage? I know I can't afford 8K copays that's for sure. I do have good ins now but in another year or so will have to go on Medicare. Trying to keep a stiff upper lip but when in so much pain it isn't easy.

[Louise]

This has been a most appreciated thread. I was 62 when dx. and had optic neuritis 14 years earlier which cleared up in 6 weeks. At 62 had a major exacerbation and was dx and told I had probably had it for 30 years.

Started on Copaxone and did well for 5 years. For the last year I have symptoms that don't go away and generally feel everything in my body slowing down. Still on the C but I don't think it is working but maybe it is and I would be immobile without it. My MS Specialist says we won't discuss SPMS for insurance reasons and I look fine, do not have any noticeable problems to others but oh my do I ever notice them. Balance, fatigue, dizziness, numbness and tingling, eye sight problems, etc.

I truly feel I will continue to be mobile and keep going but the quality of life is being compromised. Not complaining, just being realistic. I'm thankful for the 62 years of ignorance and I'll just keep on keeping on.

[EXELEVMAN]

l am now 62 and was dx'd when I was 39. was told if you can make it to 40 your chances are slim for contracting MS. I started with mild double vision. the letters in a word had halos around them. a year later had foot drop and bowel and bladder problems. it seemed that every summer is when I noticed a new symptom. ten years ago I moved into a scooter full time. nine years ago my wife of 30 years said she had things to do, people to see and places to go and that I was slowing her down, so she left. two years later I found the new love of my life on match.com. I have ppms and she has rrms and is 52, am I lucky or what? I have been on the ABC drugs for a year each with no luck. we do everything in the morning as we have more energy and stamina. last year I went from typing at 55 wpm, to one finger typing. the only pains I have are headaches which I take excedrin for and my feet will jump when I am reclined. my toes will jump up causing the tendon at the top of my ankle to ache like a son of a gun and no meds will relieve it. if it were not for the ms I would be in perfect health. one thing I hate about this disease is that it is costing me money I saved to enjoy at my golden years. now having to spend on medical equipment. bought a new minivan and with all the adaptive controls, the price just about doubled. I could have bought a snappy sports car or a monster truck. I'll leave you with this, what I expected life to be ~~"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

[dyehard39]

Originally Posted by carolinesnona

I'm 64yrs old. I was DX 8yrs ago. My neuro thinks I've had it much longer.
After a consult ,last yr., w/ a neuro in Chicago I'm headed toward SPMS.
I'm on a Rollator & wheelchair w/ out.
I'm on Rebif & it's doing very well,as last flair I had no new leisions.
God Bless Nona Judy

My symptoms started 30 years ago and could never get a dx until last Feb. I have pain in my head, have not walked for past 3 years, numbness in my legs and no meds. I suspected MS years ago and could never get tested. I am 70, boderline diabetic, hyponatremia, had polio as a child and very angry but deal with it very well. I have accepted my limitations as I have been very active until three years ago, have had many relapse blamed on hyponatremia. Over active adrenal gland. Began with balance problems, progress to numbness and nerve damage in legs and arms.
I live in reno, nv

[MBC3mom]

I was diagnosed at age 48 and will be 50 next month. I began having symptoms around the age of 40 and have experienced most on the ms list at one time or another. My worst problems are ataxia (balance),spasticity, permanent vision loss in one eye from ON, incontinence (both kinds, although bowel incontinence is pretty rare for me), and just this past year, fatigue and cognitive issues.

Up until a week ago, I worried I might have become spms because I didn't feel like I was recovering from my last flare in April and it seemed like I had serious pesky symptoms every day. But this week, everything has been better (no not perfect, just better) and feel like I am almost back to my pre-flare normal.

I guess I am not a "senior" yet, although my dh and I joke around because we are sometimes offered a senior discount. I am also often asked if I am the grandmother of my 4 year old daughter. I always smile and reassure them that I am old enough to be her grandma, but lucky enough to be her mom

My neuro has promised me he will keep me going until she is grown and I will hold him to it! But, none of us know what tomorrow will bring, even those without ms, so we do what we can to stay well and healthy and enjoy what we have while we have it

[LA ESCOBA]

I also was diagnosed when I was a bit older (49), and that neurologist, too, told me that I was fortunate to be older, because the MS would not progress as quickly as it does in younger people. I'm now 67. It hasn't progressed a lot, but when something happens, it now stays with me! My neuro tells me I've gone to SPMS. Betaseron had just come out, followed soon after Avonex, but she didn't push it, just said I might want to consider it. It was five years later that I finally decided to try one. I was having problems with numbness in my legs and some truly bad back pain; turned out I needed back surgery- -spinal fusion. Eight years later (2008) I needed another one! The second one really did me in; it took almost two years to feel kind of normal. Presently, I'm on Copaxone; I don't do well with the interferons. However, I think what helps me the most with walking and movement is PT. Since my neuro is connected with a big medical school, she just sends me nexct door to PT & Rehab, and I've been fortunate to find a woman who is wonderful, and helps boost me up when I'm down. I'm still using a walker, but am coming close to going back to a cane. Never thought I'd think of a cane as a good thing! All we can do is keep on keeping on.

[lynnkay4]

I'm 63 now and was diagnosed 7 years ago in 2003, but they believe I had MS since I was in my 20's. I was hospitalized several times because of numbness and not being able to walk.They didn't do the testing back then as they do now. Although I went to approximately 4 neuro's before I got a wonderful one. I even had one in 2000 who gave the diagnoses put me on Copaxone and 15 months later took me off of it because my MRI hadn't changed. GEE I thought that was a good thing and so did my other doctors and new MS specialists. It took tons of test and doctors before I finally got the diagnosis and the whole time always having lesions and symptoms. Come on you doctors with the degree's get with the program..

Been back on Copaxone 2 years. Still have lots of symptoms and pain and few flares here and there, but I am able to walk and that is a blessing right there. Some times I use a cane but not often. I have had most of the ms symptoms at one time or another. I have noticed this summer after a small flare I haven't gotten rid of some new symptoms. I see my ms doctor tomorrow. I can't take the steroids for the flares due to my osteophorosis being so bad and have had 4 compression fractures in my spine in 2 years.

Through my life experience I have learned that whatever this disease throws at me I will be able to handle.. My youngest son Chris was killed in Iraq 32 days before coming home from his second tour. I have never been the same since and never will be. So I take each day as it comes and I know that other than losing another child and even then I will still survive because that's what you have to do. So I feel blessed that I'm not as bad as so many others. But living without my precious son is so much worse for me than any symptom this disease has to offer.
Hugs and prayers for all of you.

[Ga dancer]

I am soooo glad to see the posters here. I was first diagnosed at age 60, but of course, had symptoms long before that time. Twenty years earlier went to infectious disease doctor because of periods of overwhelming fatigue and ambulation problems, and I thought I had CMV (I was working in a hospital and had many immunodeficient patients who were infected). The test for CMV came back negative but the symptoms were not explored or addressed. I got better and would forget about it until it happened again, and I just worked through the episodes as best I could. I have had foot drop for ages and trip over my feet, especially walking on carpet.

So then I got really worse and was falling and dizzy and ears ringing, and went to a neurotologist and flunked all his tests, nystagmus and balance, etc. So he was going to do these maneuvers to bring the crystals in my ears back in place but wanted a brain MRI in case he missed something, and told me I needed a neurologist. He did a spinal tap and many tests on my eyes and said I had MS. I told him I was too old and he was wrong, it was something else, maybe Lyme Disease. I never went back, the diagnosis was at odds with my passions - dancing, tennis, running.

I lived in spite of my symptoms pretty much normally, when really dizzy I just became more guarded - after falling and breaking several bones and falling and just hurting my pride. Friends at work would not go walking with me because I drifted left without knowing, and fell a couple of times on bumpy surfaces. Many other problems of weakness especially in my legs, almost drowned at a water park because I couldn't stand up in 2 feet of water, rescued by the lifeguard!!

My passion is ballroom dancing and have been doing it forever. Hard to do when really dizzy and the weakness prevented me from getting out of my Corvette, had to sell it, heartbroken. Then couldn't get off of a toilet bowl except in handicapped bathroom, which are frequently used by people not handicapped and I can't always wait. I nearly had to call 911 from a Costco bathroom. I broke down and called the MS Clinic and sent my findings because I just could not function in public and was having severe cognitive problems at work. They said, unfortunately, that I qualified for an appointment. My third brain MRI was worse, now considered moderately severe lesions, and there have been periods I could not walk at all, but walking and sometimes dancing without an aide. I am on Betaseron, having extreme injection reactions at the site. I was changed from Rebif for the same reason and I am afraid when they see my skin they will stop the Betaseron. I am due to return next month, but I feel better on the medication, my ability to get up out of a chair or toilet bowl, and I am mentally clearer.

My biggest problem and wonder if anyone else suffers from this - other autoimmune diseases? Having trouble breathing and my eyes are so dry they stick shut in the morning, due to return to pulmonologist next week, I am guessing it is either scleroderma or sarcoidosis (tests showed pulmonary hypertension). Also, I have had thyroid disease for many years (hypothyroid), and psoriasis, and now MS. I think all those autoimmune diseases are causing the reaction to interferon. I also have an immune deficiency (subclass 3 of IGG which causes sinus and upper respiratory decreased immunity to infection), and waiting for approval of immunoglobulin infusions for non-stop sinus infections, including MRSA. My Epstein Barr virus level is 8 times normal, and my Vitamin D was 7.

Whew, sorry for the long post and history, but looking for others with additional autoimmune problems and whether treatment has been effective.