Tell me about your MS experiences

In My Humble Opinion
1

The standard up-front disclaimer - I am not looking for medical advice here. I have an appointment with a neurologist in a couple of weeks, and I will be doing what he tells me. But I would like to know how other people have handled the situation I’m currently going through.

On Saturday, I suddenly felt faint, and decided to lie down for a while. Two hours later, I was still feeling a bit wobbly, but I decided to get up and have a little bit of food. At that point, I realized that I couldn’t taste anything sweet on the left side of my mouth, and that that side of my face was feeling a bit numb. I took my blood pressure (I got a monitor two years ago when I had preeclampsia), and it was 160/90. I called my doctor, and he sent me to urgent care.

Everyone’s first thought was stroke, of course, with the asymmetrical numbness. They did an MRI on me, and decided that I was not having a stroke, but that I did have white-matter scarring that looked like multiple sclerosis. As a 38-year-old female, I fit the profile pretty well for onset of MS. I had iritis earlier this year, and I have a long history of depression, both of which fit with an MS diagnosis.

So now I’m killing time until the neuro can see me, and obsessively researching on the internet. What I’m finding is reassuring in some spots, and frightening in others. Lots of people have MS and have no real problems from it; others are completely debilitated. There seems to be no good way to predict which group I will fall into. Every time I stumble or fat-finger on the computer keyboard, I wonder whether it’s because I’m having a flare. I keep wondering whether it’s safe to drive, but there’s no other good way to get to work. (Taking the bus would require multiple transfers plus a half-mile walk.)

So, if you have been diagnosed with MS, how did you handle the first few weeks? If your family member has MS, what was it like for you and for them? My daughter is too young to understand much of what is going on right now (she’s 2), but she was old enough to be absolutely devastated at having to leave the hospital without Mommy when I was going in for my MRI. If I’m going to have more time with doctors and time spent unable to pick her up or care for her, I need ideas on how to handle that with her.

And when did people tell others at work what was going on, and how? One friend at work knows, because she and my husband were both at the same playgroup with our daughters when I called him to tell him I was going to urgent care. She’s not going to tell anyone else until I’m ready to tell, though. So what do I tell, and when? Luckily for me, I have a job that I can do sitting down - I’m a patent lawyer. I even already have voice recognition software installed on my computer, although I’m not using it at the moment. So I don’t have immediate, short-term issues with being unable to do my job (other than the fact that it’s hard to concentrate on anything else right now). But I am the sole breadwinner for the family (and my work is how we get our health insurance), so the possibility of being unable to work looms large for me.

2

I’m sorry to hear this. You and I were acquaintances in law school. (Email me at qnjones@runbox.com if you’re curious who I am.)

Well, obviously you need to make this decision based on your own situation and comfort level, but my best friend’s mother has been wheelchair-bound for several years, and she is able to drive a van modified with disabled controls. So there’s no hard-and-fast rule that says “MS = no driving.” But if you’re still feeling faint, obviously, it’s not a hot idea.

My friend’s mother has had a rough time with it. She kept it to herself (and her husband), not wanting to worry anyone. It ended up worrying everyone, though, because her limp and other physical problems were obvious. This choice led to isolation and depression for her, a huge burden on her husband, and a lot of anxiety for her parents and children. I recommend being pretty open with the people in your immediate family (age-appropriate for the kid) and any people you are close to–especially those who can be counted on to be supportive.

I was diagnosed with bipolar disorder three months after I started working at a law firm. I decided to go the full disclosure route because I worried my illness might start to affect my work. I worked for a place that was very open-minded and supportive of people who had serious illnesses–three lawyers had had cancer in recent years. I thought I knew that they would make the appropriate accommodations and give me some time off.

I was wrong. There is a strong prejudice against lawyers with any sort of illness that might possibly affect mental faculties. MS sometimes does–it especially causes depression, both because of the illness and because of the stress it creates in the person’s life–and I would be very concerned if I were you that disclosure to your employer would lead to discrimination. Lawyers are very clever about how they push you out of your job, doing all the necessary documentation along the way. Accommodations were tried, and quickly I would be told they were not working for my employer. My evaluations trashed me in every subjective category, even though they could not point to any substantive problems with my work. And if you’re dealing with a major illness, you’re rarely in a position to fight back.

They are also likely to see you as an employee with a bleak prognosis who may require more and more accommodations as you become less and less productive for the firm. They may worry you will drive up the cost of their insurance premiums. (The year after I left the firm, they began offering a second option on health insurance–a plan that covered everything but mental health. According to my spy, it was demanded by some partners and associates who blamed me for the rising cost of their health care.)

I strongly, strongly advise you not to tell anyone at work unless you absolutely need to. Even if you need to ask for time off for an illness, I would be vague about what it is, if at all possible (e.g., “nerve problems”).

Do you have long-term disability insurance? My firm provided excellent coverage for me. Check into it. If you don’t, I would run, not walk to see if I could get some before the official diagnosis comes in.

Email me if you have any questions, especially about how to handle an employer. I learned the hard way.

Best wishes.

3

My girlfriend has it (relapsing-remitting).

There’s a really good general-purpose chat-about-anything website run by and for MS sufferers called Plain Talk, plus several more specifically dedicated to those wanting to know more about MS itself and to compare notes on treatments, experiences, etc.

Would you like the relevant URLs?

4

Please. Thank you!

5

My brother-in-law has it, and was diagnosed about nine or ten years ago. He has had a lot more emotional and mental symptoms then physical ones (he sometimes needs a cane but other than that he is just skinnier than he should be).

He has been taking injection meds for a long time and feels that, along with the power of his faith helped. I am not evangelizing, that’s just what he feels. At his last neurology appointment the doctor was shocked at how advanced the disease looked, but with few physical symptoms.

That said, it’s tough, they have three sons and he doesn’t “play” with them as much as other dads may, he gets tired easily and isn’t much of a disciplinarian. He is on disability and not working at an outside job (although he keeps the house clean and cares for the youngest child during the day).

I think in my personal opinion that his biggest problem was as soon as he was diagnosed he slumped into a depression. I know that exercise can’t beat everything but maybe if he had been inspired to fight at that point he may have been stronger in the long run, or maybe not; he may have worn out faster, who knows?

6

PlainTalk
http://www.multiplesclerosissucks.com/plaintalk/index.php

This is a private forum. There’s sort of a “trial period” in which folks are confined to a ‘newbies’ forum, then once you get full membership you get access to the rest of the board. It’s Google-proofed and that plus the ‘trial period’ thingie provides a fair amount of privacy.
BrainTalk2
http://forums.braintalk2.org/forumdisplay.php?f=17

The original BrainTalk went belly-up due to a server crash, and this is the board-in-exile. It’s not as active as the original BrainTalk. Those of you who who remember our own board’s Winter of our Missed Content can relate.

She says she strongly recommends the first board, it’s esoteric but she says the screening process makes for a better board.

7

A good friend of mine was diagnosed fifteen years ago(before we’d met actually). I’ll see if she can stop by.
-Lil

8

I know what you are experiencing is very difficult! I was diagnosed with MS about 5-1/2 years ago. It was a shock and I felt like it invaded my whole world. For the first week, I had a real strong pity-party for myself and felt like it was inevitable for me to become completely disabled. My entire left side had gone numb twice, four years apart. I could not feel hot/cold or pin pricks. A couple of years ago I experience double-vision. It was not blurry, I just saw two of everything when I looked to my right. THAT was interesting!! In all cases, symptoms for me last about two to three weeks before disappearing.

I have a strong midwestern “pull-myself-up-by-the-bootstraps” streak, however, and it occurred to me fairly quickly in the beginning of “my new life” that there are children fighting for their lives everyday, so what the hell did I have to complain about at this point! I could walk as well as I ever could and I needed to be thankful everyday for the abilities that I had.

I spent about a year “being careful” and “making sure I had enough rest”. . . to excess. One day when I was concerned about “a sensation” in my leg and I thought I needed to get more rest, this voice out of nowhere (in my head) said I need to get off my ass, get moving, lose my excess weight, and do everything I could to be healthy. I may not be able to walk someday, that’s true, but it certainly isn’t going to be easier carrying the extra 70 lbs!

The next day I started walking and began a sensible eating plan. I lost the 70 lbs over the course of a year and have maintained a fit a healthy lifestyle ever since. Getting exercise EVERYDAY is absolutely the best thing I can do for myself. I walk, work out at the gym 3 times a week (cardio & weights), and do yoga three times per week. I believe in my heart and soul that this is the best thing I can do for myself. Keep healthy, keep strong, and keep positive forces in your life.

I give myself an injection of Avonex every Thursday. I have done this without fail for five years, which I understand is unusual to do for that long. I give so much credit to my husband, Hakuna Matada, for his support and being there with me each week these past 2-3 years. He is my strength and support in this. . .and “injects” humor into these sessions by spanking my ass when applying the bandage :slight_smile: I don’t know that I could have continued without his support.

I quit reading about MS a long time ago. There is so much out there that was terrifying me!! The truth of the matter is, this is an unpredictable disease and so much that happens to others may never become my personal experience. When I cross a new bridge, I read a little more to educate myself, but I don’t want to fill my mind with a mountain of negative “what ifs”. I’m not saying to remain ignorant of the possibilities, just don’t wallow in negative energy. THAT is not good for your health!

I did not keep this a secret from anyone. My family and friends are a source of tremendous support. Many people know about it at work. I don’t brag about it, but I don’t hide from it either. As long as I don’t make it this big ominous horrible thing, they don’t either. They are aware, however, that in years to come I MAY experience some challenging segments in my life. BUT, doesn’t everyone? This is just my thing. . .OUR thing :slight_smile:

I work in City government as a business analyst. I do not have clients that would worry about my mental abilities on their legal cases. You will have to make your own judgement on the appropriate level of disclosure for your circumstance. My guess is that you would be ok letting trusted colleagues know. . .not clients.

Good luck. You’ll get through this and with strength and work, I believe you will experience life in a whole new way. It may be premature to say this to you, but I want you to know that I came to a point in my life where I realized that in many ways this was the best thing that could have happened to me. I “woke up” in my life, took more control in my course in life, and enjoy a richness I’m not sure I would have without this development.

I’ll check back to this thread. If you have any questions that I can help with, let me know.

Elaine

9

I’ve got a sort of incomplete but happy story.

When I was very little (3 or 4) my mom was diagnosed with MS. She would have been in her early 30’s at the time. She went to Cleveland Clinic doctors and had top-notch health care (from Ford Motor Co.) so you know she had some excellent diagnosis and care.

I remember as a kid having to hang out with neighbors, sitters and family while mom went off to get her tests and stuff. I don’t remember much else but my folks filled in the gaps later.

According to my mom’s doctors…she got over it. She no longer is diagnosed with MS. She started working when I was 7 so she must have “gotten over it” when I was 5 or so.

It confuses her and confused her doctors that she no longer had MS. But that was the case.

Oddly enough, 20 years later, her sister was diagnosed with MS (she was in her late 40’s at the time) and it is progressing. Her situation is that she has balance problems, her legs are tired/don’t always work right (she walks with a cane) and she is very very tired. She’s now on disability but still works 2 or 3 days a week every so often. She had a very hard time accepting having to walk with a cane and asking her doctor for a handicapped parking tag.

But, she manages to have a good time with her 4 toddler grandkids, chase after her dogs, walk up her split-level home’s stairs and drive 3 hours every so often to visit her sisters. From afar, I’d say she’s handling it well.

My mother keeps an eye out for signs of recurrance in herself, since her sister has it too.

Best of luck Nuge!

10

Might want to ask a mod to make the thread title clearer; I opened this thinking it’d be a discussion of computer operating systems and software. Might get more responses if it was clear you were talking about the disease?

11

I have MS. I was diagnosed just over 2 years ago… June 04. Mine started with Optic Neuritis. My vision started going dark and my eyes hurt. I didn’t have a clue about MS at the time, I thought it might be glacoma or something.

Just to give you a general idea about what to expect. The first thing they do when they suspect MS is an MRI. You said you already had one. When you had your MRI, did they do it with contrast? (inject you with a dye to make things show up better). If not, the neurologist may order another MRI. Mine did because the 1st MRI ordered by the opthamologist didn’t include contrast.

If the MRI isn’t conclusive, the neurologist may try a lumbar puncture (spinal tap). That’s how I got diagnosed. Only 2 lesions showed up on my MRI, on the optic nerve, but the spinal tap was conclusive. The MRI and the spinal could both be inconclusive which makes it much tougher to diagnose.

If/when you get a positive diagnoses, then you have to decide if you want to go on a disease modifying medicine and which one. Bin-Gay mentioned he’s on Avonex, that’s one of them. I’m on Copaxone, another. It’s a daily injection instead of weekly, but I chose it because of less reported side effects. The thing about the Meds is, they don’t all work for everyone. If one doesn’t work, you switch to another.

Which brings up an important point. One thing you will learn is MS is a highly variable and random disease. No 2 people are alike, so other people’s experiences will only give you a “what may happen”.

As far as telling folks, all my friends and family know. At work, I haven’t officially “came out” but most of my coworkers know about it. I’ve been fortunate so far in that I haven’t had any flares since getting diagnosed and haven’t missed any work because of this.

Currently, my main problems are fatigue and muscle weakness. About 80% of people with MS have problems with fatigue, it’s the most common symptom.

Good luck with it, hope it turns out to be something innocuous.

12

Another MS-er reporting in. I was dx’ed about 7 years ago, although it was highly indicated 5 years before that.

It took two clear episodes over a period of time plus positive MRIs and a spinal tap to diagnose me. I have some anger about that protocol, but that’s for another time.

As others have noted there are different classifications of MS that all relate to the progression of the disease: Relapse/Remitting; Primary Progressive; Secondary Progressive.

There are not clear indicators about which “mix” of symptoms you might get, and everone is different. I predict however that they will find there are “subsets” of MS and that there are predictors of which cluster of symptoms you might get.

The symptom most troublesome and likely to cause disability for me, like Fugazi is the fatigue. I’m on an anti-narcoleptic for it. I spent two years on Rebif, also a disease modifying drug in the interferon group - but it appeared to cause more difficulties for me. It is very much a choice of lifestyle and tolerance when you choose a disease modifyer. Personally I’m waiting for another type of drug to finish third phase trials.

As noted, there are tremendous websites and message boards out there to support you through this early stage. I’d caution you to look for a board affiliated with a known reputable agency or hospital, like the NMSS or Mass General hospital or Brain Talk (as mentioned above) boards.

It’s quite normal to feel that your “implied contract of good health” has been violated and that life will never be the same. It takes time to absorb this information and figure out how you can keep all of your present obligations while dealing with the new you. A diagnosis of MS is not a death sentence. There are few ways to predict how it might progress or impact on your mobility, etc. Only time will give you some indication of how quickly or completely it might impact on you.

Try to not worry too much. I still work full time and with some adjustment keep up my old routine. For what it’s worth I re-subscribed this a.m. so that I could respond to your post. There are many, many, good souls who have walked this path before you and are anxious to help make it easier.

All the best,
Heckity

13

Just to present the other side of the story, I knew someone, well really knew about someone, who was diagnosed with MS before I met his family. His progression was unusualy straight downhill, with less “remitting” than is common, and unusually rapid in that downhill progression (or so I understand from listening to his wife/widow, whom I know much better). They had just about enough time from diagnosis to complete disability for her to get a degree which allowed her to be better paid than he had been. He was cared for by his parents, his wife, his daughters, paid caregivers, and members of the community (not neccessarily in that order) for a number of years, slowly declining, and periodically having life threatening emergencies. He did “write” a column for a local paper, and a couple of books, after he became largely incapacitated. He was put into a nursing home in the spring on what was intended to be a full time basis, rather than respite for his carers–and very angry about it. He died this fall. For probably the last year, he had been largely unable to make himself understood, even by those who had experience trying to understand him.

Important note: don’t get too depressed reading his story, it is my understanding that his progression is atypical. And, since I am reporting things third hand at best–and choosing not to report various personalizing details which I am aware of-- I may have things wrong. But, if you do have MS, you should be aware of the worst case scenarios, and not just the optimistic “it sucks, but I can live with it” tales provided by those with that kind of experiences.*

*Not in anyway intended as a criticism of those who provided “it sucks by I can live with it tales”

14

A former colleague of mine was an attorney with MS. Her only usual symptoms were some mild vision problems, which were controlled with medication. She managed not to reveal it to our employer, and when she decided to quit, it was very much her own choice.

15

I’m continuing to read, both this thread and the very helpful email messages that I have received from those who don’t want to post for one reason or another. I’m still trying to process it all. I do have a referral for a different neurologist from a friend/colleague who happens to be a brain surgeon, so I’m going to call him to see whether he can get me in any time soon.

Someone upthread asked about the diagnosis - I did have an MRI with constrast, of both the head and the neck. I have 3 CDs worth of images now - picked them up from the ER last night. I haven’t actually looked at them with a radiologist, so I don’t really know how to see the scarring/plaques on them - but for some reason it’s comforting to have them in my possession.

A tidbit that made me laugh - I got a call from the ER yesterday afternoon. Apparently they were reviewing my scans, and noticed that I had a sinus infection. The doctor called to ask if I wanted him to call in a prescription for antibiotics. That has got to be the most expensive way ever to diagnose a sinus infection.

16

My wife was diagnosed 3 years ago at 32. She had a history of medical annoyances that were never diagnosed with any confidance. During her pregnancy with twins, she complained of a constant headache and had pre-eclampsia which forced her into 4 months of bedrest. The kids came along fine, but the headache remained and she didn’t do much about it.

2 years later were going out for a walk in the evening. She tripped, fell and broke her arm. Shortly after that she lost her sense of smell. The doctor had an MRI done and sent to a neurologist and was diagnosed with MS. At first we felt relief that it wasn’t a stroke. She has since had a couple of flare-ups but nothing too dramatic. At this point she is still dealing with constant headaches and trying to find the right medication to help her. She is also dealing with neurological pain (no physical cause) in her arm and face, and a wonky leg which contributed to her fall. I don’t know that things are getting worse or whether we are more aware of her condition and are looking more closely at them.

Do not tell your employer about this. My wife told her employer thinking that she would give them a ‘heads up’ and so they would be aware of the condition. She has been on disability for 2 years now (started with a drug reaction, rather than caused by MS) and they will not let her back without a note from a doctor giving her a clean bill of health. Basically they don’t want her back! If she had not disclosed her condition to the employer, then she would still be working. Her employer was being a dick before that though. When she had broken her right arm, they wouldn’t let her work because she had difficulty writing and typing and they could not make any sort of accomodation.

Just recently she has started receiving a bunch of community support. She’s had numerous UTIs for the last couple years and got fed up and asked for a referral to a Urologist. He did some tests and made a offhand comment about using a catheter. So a nurse shows up to help out and was appalled by the treatment that she has been getting to this point. The nurse has arranged for a physiotherapist and continued to come as a part of the Urologists treatment. The nurse has also started arranging for various assisted devices to be delivered to help my wifes mobility and domestic abilities. (We live in Ontario, and this is all covered under our provincial medical coverage).

We haven’t contacted or attended and MS Society meetings as seeing people with severe disabilities as a result of MS just depresses her, since she immediately starts envisioning herself in that condition.

She has been using Rebif for the last 3 years and it is getting tiresome. The shots hurt like a bee sting and it’s tough to prepare for it 3 times a week.

We are also noticing (in the last year) that TV shows have used MS as a reason for death. We turned to each other and rolled our eyes. I guess cancer is passe.

MS isn’t a death sentence, but it sure ain’t pretty either. I hope your situation is mild and free of drama and discomfort.

PS. Watch any applications for various types of insurance. With MS, they will decline coverage…

17

Huh, that is so funny. I had a sinus infection when I had my 1st MRI done too. They put me on 2 weeks worth of antibiotics. At first I got excited/ relieved thinking the sinus infection was causing my vision problems (I had no other symptoms at the time).

errrrrr… No.

18

Two more links from my girlfriend.
The MS Sucks website for a laugh and a good read:

http://www.multiplesclerosissucks.com

Here is a link to a patient driven site with “reviews” of MS neuros:

19

This is a big reason I was cautioning against disclosure. With any chronic illness that will require accommodation, many companies start to feel like they’d be better off if you were gone–even if you’re going to be on their long-term disability policy to do it. If you want to control how long and how much you keep working, you want to keep control over how much information you give out about your condition.

20

I saw my neurologist on Wednesday. I’m just going to repost my blog post about the visit here: