I may have Multiple Sclerosis: What should I expect?

Miscellaneous and Personal Stuff I Must Share
1

I know you’re not a doctor and I’m not asking for medical opinions or advice, yada, yada…

A recent MRI showed either demyelination in what they called “multiple foci” of my brain, or perhaps the presence of (unnoticed) damage from “mini-strokes”.

My doctor said that, if it is demyelination, that means I have Multiple Sclerosis. My question is, if I do have MS, what should I expect?

Now, I don’t presently have any symptoms that I can (unequivocally) say are from MS. I do have very minor balance problems (I occasionally have to take a half step to stay in balance) and I’ve been getting a little lightheaded or dizzy, but I can control it by changing what I’m doing. Once or twice a week, something I’m drinking will go down the wrong pipe. And a couple of months ago, my right knee didn’t seem to want to hold me up (lasted for about 1 hour).

In my reading up on MS, these are possibly symptoms of it. But they’re also so general (and generally minor) that they could just be “normal” aging symptoms. (I’m 55, male, generally in good health, non-drinker, non-smoker, not overweight.)

So I guess my real questions are, if this is MS, what should I expect? How does the disease progress? Does anyone else have a confirmed MS diagnosis with no real deficits?

To the Dopers with MS, how does it affect your life? Do you occasionally have deficits which get better in a little while? Or does some ability just “go away” and never come back? How old were you when you were diagnosed? How often do new symptoms appear? Does MS affect you mentally or primarily physically?

Ok, I guess I’m a LITTLE freaked out by this, but I’m not panicking. I’m trying to do what I’ve done with other life issues: gather as much information as I can so I can plan what I need to do.

Thanks for your experience,
DLM09

2

The main points my neurologist emphasised were that in terms of life expectancy, MS sufferers differ little from non sufferers and as far as the course of the disease is concerned, it’s rarely clear initially which sub type of the disease you may be suffering from. The prognosis depends on identification of this sub type, ie it depends…

3

Something that has been controversial in the past has been the effect of temperature on MS, specifically that heat exacerbates the symptoms of MS. Since the mechanism is not well understood, some deny this is the case. It is something to keep in mind. Some try to treat the pain with a dip in the hot tub to find they make it worse. Also if symptoms worsen in summer, you might see if keeping cool helps.

4

Well, the good news, from what I understand, is that the later you get diagnosed, the less serious the progression tends to be. 55 is pretty late.

You’ll hear as many stories as story tellers. Some people apparently get diagnosed and never have another symptom. Some of the new medicine seems to slow the progression and symptoms fairly well.

I speak from the perspective of someone watching my wife (now ex-wife) go through this for the past 10 years. From my vantage point, the physical symptoms are tough (fatigue, unsteadiness, some minor pains) the cognitive effects are worse. I don’t know how you can prepare for this, but hug your loved ones and let them know you’ll do your best. My ex suffered a series of emotional and cognitive issues not unlike frontal lobe damage. She became impulsive, self destructive, paranoid, depressed, and sometimes confused. She left me (twice) for other men, had huge anger issues, and seemed scared and confused a lot of the time. She resisted efforts to get help, and pushed away those who cared about her most. (YMMV, she wasn’t completely emotional stable to begin with)

Get a great neurologist (they are hard to find-- several said “there’s really nothing we can do except diagnose this”) and try to trust your loved ones when they advise you. Keep a healthy lifestyle, continue to refrain from alcohol, communicate your fears, hopes, and problems with someone you can trust. Don’t alienate yourself.

Actually, posting here is probably a healthy start. There are certainly good days and bad days with this disease. I wish you the best.

5

I was diagnosed with MS 8 years ago (almost to the day!). I was a 41 year old woman experiencing for the second time in four years numbness on my entire left side. It was like a line was drawn down the middle of my body and I was unable to sense pin pricks or temperatures on my left side. When this second exacerbation occurred, a battery of tests was ordered and MS was confirmed. I have the relapsing/remitting form of MS which means I may have an episode that will last a period of time, then it will go away. In my case, symptoms when they occur (rarely), last about 2 weeks.

I began taking weekly self-administered shots of Avonex after being diagnosed and I haven’t missed a week in 8 years. The meds don’t cure MS, but they slow the number of exacerbations that will occur, and THAT is everything. My neurologist (phenomenal!) has explained that when recovery occurs from an exacerbation, the ability doesn’t quite return to the level it was before, thus the deterioration over time. Reduce the number of exacerbations; reduce the deterioration.

I have an MRI done every 2 years. On my last MRI, we couldn’t even detect any lesions anymore. I was amazed! I thought the Avonex wasn’t a cure?! My neurologist explained that the medicine is like putting a stopper in a bathtub that you are trying to fill with water. Once the stopper is in, the tub is able to fill up. In the case of the medicine, it slows the disease and allows the body to work at healing itself. In my case it is working very well.

When I was diagnosed it was like getting punched in the gut! I was in shock for several days and for a long time everything I thought ended with “and I have MS”. It was a prevailing thought in my life. When I initially got off my “pity pot”, it was because I realized that there were many, children even, fighting for their lives for any number of reasons. The fact was I felt no different that I did the day before or the day before that. I could walk and so far was very able-bodied. It was the jump-start I needed to get my head back in my day-to-day life.

For about a year, though, everything I felt, every little pain, ache, tiredness, etc, I wondered if it was MS. I found myself buying into the “don’t overdo it”, “get plenty of rest”, yadda yadda yadda. Yes, those are important, but I was taking it to the extreme and had a moment in my life where I realized I wasn’t doing everything I could to be as healthy as I could and give myself every chance to stay ahead of this thing! I was overweight, out of shape, and very low energy. I thought that there may come a time when it would be hard for me to walk, but it certainly wasn’t going to be easier carrying the extra 80 pounds!

So, I put myself on a sensible food and exercise plan. Over the next year, I dropped the extra weight and got fit. For the past six years I’ve maintained a healthy weight and have a hard workout at the gym a minimum of 3x/week with other activity (usually a brisk walk) on my off days so I get my 10,000 steps in per day. I also make sure I don’t get too stressed out. Two of my three exacerbations I can point to an extremely emotionally stressful situation (parent related) just prior to their onset, so I try to manage be aware and manage that.

Since getting my act together and engaging in life (not just letting it happen to me), I’ve only had one exacerbation and that involved double vision. It lasted about two weeks and was a bit challenging, but then it cleared up and I haven’t experienced it again.

It’s hard to know as I get older and I experience something, is it MS related, or simply a part of my aging process. The fact is, as we get older it gets harder to determine. My viewpoint, it doesn’t matter the cause, it is what it is. . .I just deal with it.

I hope you have a good support system around you. My husband, Hakuna Matata on this board, is a fabulous support. He has been with me every week for my shot for 6 years. I’m flexible enough (due to regular yoga practice) to turn around and give myself my shot in my rear (fewer nerves). He is there with the bandage and a spank on the butt to make sure it is firmly applied :stuck_out_tongue: He’s also very understanding at those times that I need the extra rest and nap time.

In some ways, being diagnosed with MS was a wake-up call for me and I’ve reaped benefits from the diagnosis. I wouldn’t wish it on anyone, and the future is certainly uncertain, but how is that different for me than for anyone else? To sum up, IT IS NOT A DEATH SENTENCE! Take heart, advances are happening all the time! I’m healthier now than I’ve ever been in my life because of my focus. I made lemonade out of the lemons. . .and you can too!

If you have other questions, I’ll check back in regularly and offer thoughts from my own experience. It’s an unpredictable disease and no two experiences will be the same, but it is manageable and not insurmountable. The fact that your diagnosis is coming later in life is a good thing. The fact that you are not experiencing big mobility issues is a good thing.

I’ll be anxious to hear how your journey continues. Keep us (me) posted.

–Elaine

6

One more thing. . .I thought I’d educate myself by reading everything I could about MS. Scared the shit out of me! After awhile, I quit reading about it and my outlook became better. I figure as I encounter new “issues”, I’ll read more. Until then. . .I choose to be blissful :smiley:

7

It can vary widely.

You could go on having the same symptoms exactly that you’re having for decades. Learning what triggers the symptoms and avoiding those triggers is the best recipe (in my case, sudden temperature changes and some kinds of stupidity… the second one is difficult to avoid, but I try).

I’m diagnosed as “not MS but merely MSlike.” Aaaaah. I’d had a series of “occasional stupid health problems of undetermined origin” since I was 15 (I’m 40 now); three years ago, my brother’s father in law was diagnosed with “some kind of sclerosis” but my relatives couldn’t remember the exact name and, in looking up the two most common ones, I had the shock of my life seeing a list of 20 symptoms for MS which amounted to 18 “OH SHIT!” (later I found out the father in law had ALS, not MS).

As a neurologist was about the only specialist which hadn’t gotten a look at me when I was in my teens and the problems started, I got booked with one, we got a scanner and he said that, since there’s no visible damage, “it’s apparently not MS, but that your parasympatic system overloads when you’re under a lot of stress, it tries to compensate for the stress and overcompensates.”

The symptoms are the same, the orders are the same: avoid unnecessary stress of the kind that drives me to vertigo, fainting, sensory disassociation, tummy troubles and the shakes. The only symptom I’d class as “mental” is the sensory problems. Sometimes I look at a corner of the room and, although my mind knows there’s two walls and a ceiling meeting there, my eyes insist in processing it as three separate entities with no relationship to each other; sometimes when people talk to me I get every individual word but the sentences don’t make any sense. When my job drives me to that, it’s time to change jobs (I just left a project last week because of this, I was having symptoms daily and there is No Way I’ll put up with that if I have other means of putting food on the table).
It could be something like what you’re already getting forever or it could get worse. It is not possible to know in advance which will be your case. I know that I’ve read descriptions from J.K. Rowling of her mother walking around the house on all fours when her legs wouldn’t support her, but I don’t think I’ve seen any where she mentions how often it happened.

8

This is very good. Keep it coming!

At this point in the process, I’m just trying to stay calm. It hasn’t been confirmed yet as MS and in my mind, that has to be the next step.

Thanks for your stories and experiences.
DLM09

9

Are cognitive effects common? I know a few people with MS and that aspect has never come up in conversation - only the physical aspects. (Of course, given the social stigma about mental illnesses, it may be that they didn’t want to discuss it.)

10

I started this thread when I was diagnosed a year and a half ago - maybe some of it will help you. There are some links to good web sites, at least.

To update from what’s in that thread, I am still officially classified as “clinically isolated syndrome,” which means I haven’t had a second flare and therefore don’t meet the diagnostic criteria for MS yet. However, my neurologist says that the probability that I have it is in excess of 90%. I’m taking Copaxone daily, which is a little annoying but not a big deal. (The injection sites swell and itch for a few days, so you have to rotate sites around your body to give them time to go down before you stick yourself again.)

I have two ongoing symptoms, both of which are extremely mild - I have a numb area on one thigh, and if I tip my head way back, I sometimes get a vertiginous sensation like going over the drop on a roller coaster. It scarcely affects my day-to-day life at all, and I rarely think about it these days (despite having been able to think about little else for the first few months).

Do you have a referral to a neurologist? They may want to do additional testing to pin down whether it’s MS or something else, and can probably educate you better than your primary physician can.

(Oh, and to Northern Piper, yes, cognitive effects are fairly common. Little bits of your brain are ceasing to work properly, after all. The symptoms depend heavily on which bits. The good news is that the brain is so plastic that you can do without a lot of little bits in many areas without a big effect.)

Good luck, DLM, and let us know how it goes!

11

I was diagnosed with relapsing-remitting MS last March. I wish I’d had Bin-Gay’s post to read back then! I definitely went through a lot of “my life is over!” stress and anxiety. I’ve never felt so lucky to have the excellent health insurance that I do. My great-grandmother has MS – she’s 87 and still can walk with a bit of assistance. (I’m 32 – I broke my family’s long tradition of teenaged marriages and motherhood.) Her MS went undiagnosed for 30 years, and even then there weren’t any drugs like the ones we have now, so if I’m anything like her hopefully I will be okay.

In April 2008, I enrolled in a NIH drug study where I take Copaxone every day as well as Avonex every week. They’re trying to see whether it’s more effective to take both rather than one or the other. I spent the first few months getting used to the drugs, especially the side effects from the Avonex – several hours of flu-like aches and pains and chills, and extra sleepiness. Taking ibuprofen every four hours for 8-12 hours before doing the shot* on Friday evening plus some Benadryl before bed really helps keep those symptoms at bay, although I still need about 10 hours of sleep that night and Saturday night to get past it completely. My husband has been great about all this, and does the shots for me.

They are working on new medications all the time, including some oral forms that seem to be more effective at reducing MS activity and have fewer side effects. That’s good news for people who don’t love getting shots, since all the current MS meds are injections.

Summer heat in Houston is rough on pretty much everyone, but it was really hard for me. I had serious fatigue, some dizziness, and my left arm would shut itself off for a few hours if I got overheated. I had just had an exacerbation that affected my left hand and arm from April-June last year, so that was a factor. Since things cooled off in October or so, I’ve been fine. I can be in warm rooms, take hot showers, etc. without problems. But it’s true that some people with MS aren’t bothered by it, and some people have trouble with cold instead.

I think the medication really has helped. I haven’t had any exacerbations since the one I was having when I started the meds, and I’ve felt fine. If I get at least 7-8 hours of sleep at night, I’m good. After several months of feeling fatigued and pathetic (“my life is over!” + summer heat = self-hating ice cream binge), I started to realize that my life isn’t over, and I really might be okay.

I’ve been overweight since junior high, and that’s not good for me regardless, so in January I started paying attention to calories and nutrition, and I’ve lost eight pounds so far. I’m probably over-cautious about exercise because if I do too much, my legs get tingly, but I’m going to try to figure out what my limits actually are. I bet I can exercise just fine, and I don’t need to run a marathon anyway. Eating healthier has made me feel better in general, so I’m cautiously optimistic about how I’ll feel this summer.

There are plenty of horror stories about MS too, and it’s easy to concentrate on those and get really upset. I’m only a year into this, and there’s no way to know what will happen in the future. I have to keep reminding myself that nobody else knows what will happen to them either! There’s every chance that it won’t affect my life all that much, and I’ll have the opportunity to get old and die of cancer like anyone else. :wink:

So that’s my advice: if you don’t have a healthy diet now, work towards that. Get plenty of sleep. My doctors recommended doing puzzles, sudoku, and other brain-challenging things to try to keep the brain active and judge cognitive function. So far I haven’t had any problems in that area, and I do sudoku for an hour or two each night while watching TV (shows I don’t have to watch very closely, obviously).
*Yes, “It’s Friday night – time to do my shots!” has a new meaning for me now.

12

An Update:

When told about my MRI results, my doctor said it could be either MS or “mini-strokes”. We’re doing tests for both possible diagnoses.

She said the mini-strokes could be caused by plaque in my arteries breaking free and lodging in my brain. So I had an ultrasound test of my neck yesterday to see if there was any plaque.

I got the results of that test today: it’s completely normal.

While “completely normal” is good in one sense, it’s also making the non-MS alternative diagnosis less likely. I still have more tests to do: an electrocardiogram next week, and an appt. with an MS neurologist coming up.

DLM09

13

As others have said, your age indicates that you probably have a milder form, if you have it. I have primary progressive - no remissions to speak of, but the deterioration is very slow. No one can really say what will happen with it as the symptoms vary enormously from person to person. I’ve has it since my teens but wasn’t dx’d until I was 37. One thing I have found that seems to help (a bit) is vitamin D. After 5 years of being unable to move anything below my waist, I started on extra vit. D and I can now wiggle my toes!

Good luck!

Nava - I had one neurologist tell me the same thing. I went to another (with the same MRI) and was told I had Classic PPMS.

14

stocks up on tomatoes

That’s pretty much what I’m guessing, lynxie, but between how the Spanish medical system works, how often I move around, and so forth, I’m not bothering to pursue it. The neurologist did mention the possibility of taking a daily pill “in case it does be MS,” but we reckoned it wasn’t worth it unless I do get worse. Avoiding the triggers makes more sense than masking them, and I’d rather not take any pills I can avoid (my mother has been on way too many pills since forever, got addicted to painkillers and antidepressants when I was in High School - I realize I’m not totally reasonable about this).

In my case the temperature trigger is “big temperature changes,” this affected me a few times in Miami but much worse in Costa Rica (I was older and had more negative stressors going on). Being at 40C in the shadow with a fan isn’t fun, but doesn’t make me sick. Being at 40C in the shadow, then walking into an office some harebrained moron is keeping at 18C - that does make me sick, bigtime.

The possible-MS is one of the reasons I want to pursue the possibility of switching careers from consulting to translation, as translations are the kind of job that ought’a be doable from home. Consulting from home is more complicated.

Note: I once had my then-GP of ten+ years tell me “I hate you, not only do you walk in and tell me what your diagnosis is, you also get it right!”