My wife probably has Multiple Sclerosis

Miscellaneous and Personal Stuff I Must Share
1

My wife, just coming off open heart surgery (leaky valve) in July, has been having arm problems (and continual fluid in her lungs) since.

Well, for her arm she’s been going to therapy - it’s not uncommon to have problems related to nerve damage after heart surgery. Today, however, she got a call from her doctor saying a recent MRI shows brain abnormalities ‘consistent with MS’ that he thinks explains the arm muscle function not coming back well. Also it explains her imbalance that’s improving much more slowly than they thought it would after the surgery.

She’s freaking out. I’m kind of numb, I think. They won’t say it’s MS, but the doctor did say that the MRI is the ‘most diagnostic’ of all the tests they’ve done. They want to do a spinal tap and an eye test to try to disprove it’s multiple sclerosis, but my wife feels like it’s a done deal.

Anyone know if there are any real possibilities it’s NOT MS?

Any experience with MS out there? What’s it like?

2

I don’t have MS. Or yes. Maybe. Who knows.

I do have MS-like symptoms, but the MRI comes clean, so apparently it isn’t MS, but in any case the instructions from the neurologist are the same as if it was MS: “since you have a fair idea of the stressors that trigger it, avoid them as much as possible.”

There are some medications for it out now, and more in testing phases. That’s good.

It’s one of those diseases whose prognosis varies widely. Some people end up in a wheelchair real fast; others never need one. How much that depends on the patient’s physical state and how much on his state of mind I don’t know: one of the symptoms I get is vertigo (I feel like I’m about to fall, even though I know I’m sitting down and the chair isn’t going anywhere) and when that happens, walking while touching a wall with my hand helps a lot; my grandmother has vertigo too (in her case due to chronic ear infections) and she just refuses to leave the house (which in turn leads to further mobility problems).

For some patients, it’s occasional bad days followed by months of being healthy as a rose on the bush. For others, every attack means losing function for days or months. Which will your wife be? No idea.

The triggering stressors also vary from person to person. I can spend weeks working 16x6 and be tired but fine so long as the work is for specific goals; make me stay 12h with nothing to do because you want more face time and I’m bound for an episode. Sudden, large temperature changes (40C outside, 18C in the office) are triggers for me as well.

I know we have several Dopers who have MS, at least one whose wife had it and others who also have it in the family.

Compulsory link to the National MS Society.

3

She probably doesn’t qualify for a clinical diagnosis of MS yet, but possibly for clinically isolated syndrome (CIS), which is still what I have after one flare four years ago. But an MRI that looks like MS plus MS-like symptoms is more than 90% likely to proceed to full-blown MS.

How old is she? It’s most common in women in their 30’s, I believe.

I was pretty freaked out about it for a year or so, and now I rarely even think about it. I have had no further flares, so it just means a neurologist visit and an MRI once a year (and I think I’m going to every other year for the MRI now).

If you want to know about other possibilities, has she had genetic testing for MTHFR? That can cause abnormalities on an MRI that resemble MS. (Was her MRI looked at by an MS expert? Mine says he can tell the difference between these, but I don’t know if any random radiologist can.)

My understanding is that neither the spinal tap nor the eye test will rule out MS, by the way - just make it somewhat less likely if they are negative. (If one of them is positive, that may confirm an MS diagnosis.)

The good news is that if she is in the middle of an MS flare, they can give her IV steroids and it is likely to go away.

4

My mom was diagnosed with MS in the early 80s. I don’t know what happened or how long the diagnosis lasted, but she does not have MS now. I don’t think her diagnosis lasted very long…I just remember being a little kid and being shipped off to relatives for a bit because mom had “tests” and she was often too tired to take care of 2 little kids.

I wish I knew more about the circumstances, because it does seem odd to me to tell people “oh yeah my mom had MS but got over it” but that’s really the best I can do with that one.

Her sister was diagnosed about 5-10 years ago (this would have been 10-20 years after my mom). She lives with it. She walks with a cane and is quite “wobbly” but she does ok. Still is a great person and hangs out with her grandkids, she’s just tired more often.

One thing I’ve heard - and I will not commit this to fact - is that by a certain age your MS stops progressing. So, if you are diagnosed later in life and symptoms don’t get too bad, they probably won’t get any worse.

Best of luck, hope it all works out for you.

5

Unfortunately, this is not true. The later in life you are diagnosed, the worse your prognosis, in general. And MS is not a disease that just goes away - once you’ve got it, you’ve got it. Your mother probably just turned out to have something else.

6

Yeah, I was typing my post while you were typing your first one, and I bet she might have had (or has) what you described (CIS).

I probably should have said that it’s possible for everything to look like MS, and have doctors think it’s MS for a while, but ultimately not end up with a full MS diagnosis.

7

Thanks for the responses. My wife is 44.

I don’t know what that is. She has been diagnosed with Hashimoto’s (several years ago), and other auto-immune disorders (including lupus, but then she was un-diagnosed with lupus).

8

My sister was diagnosed about 18 months ago, so I’ve heard/read a lot about it recently. There seems to be several different basic paths for the disease to take, and no matter what, the symptoms vary widely, depending on what part of the brain/nervous system gets attacked. Some folks experience almost no symptoms at all for the rest of their lives, and others (before the arrival of medications) degrade fairly quickly. Some folks experience transient symptoms (paralysis, sensory malfunction, etc.), and for others, once new symptoms make their debut, they are permanent.

A number of meds are available. They don’t cure MS, but they reduce/delay the progression of the disease. AFAIK, all involve daily/semi-daily injections, and they are awfully expensive if you don’t have good health insurance. My sister tried one drug for about 9 months, but switched to another after she and her doctor realized it was causing some nasty side effects. New drug is treating her much better.

The spinal tap will be to look for oligoclonal bands. Their presence is strongly diagnostic of MS, but their absence does not disprove MS.

More information here about the eye tests.

Your wife may feel like it’s a done deal, but it’s important to get a very definitive diagnosis so that you can take useful action. If she doesn’t have MS, then you don’t want to waste time/money/pain on the disease-modifying drugs. If she does have MS, then it’s important to start these drugs as soon as possible.

For a real front line perspective from a sane, rational MS sufferer with a sense of humor, visit www.multiplesclerosissucks.com .

9

This varies by country and all, but what the neurologist was talking about for me was a pill, not injection. In the end we figured it was best to not take it and just focus on the “avoid stress” part, since it isn’t even sure that I have MS and if I do it’s mild (24h like shit, then next day I’m fine, and I’ve had to learn to “act funny” during episodes because if I don’t wobble, some people don’t notice I’m “the color of hospital walls” as described by someone who did, indeed, notice).

10

My sister-in-law and aunt were both diagnosed within a year of each other. Both are on injection meds and are pretty stable. My aunt hasn’t had any severe flares since diagnosis, my sil has had flares but goes into remission after each flare.

My uncle died from MS last year. He was 84, and he was pretty stable until the last 2 yrs or so. When severe symptoms started for him, they kept going until it killed him. I can’t say that MS took him “early” seeing as he was 84, but he had no other underlying health problems.

Everyone’s course of the disease is different. My sil is still very active, she skis, runs, bikes and maintains herself that way. She was a Div I athlete and marathon runner prior to the diagnosis, so she and her doctor want her to keep her high activity level as long as possible. When she is flaring, her feet and ankles numb and lose strength. Instead of running, she straps herself into a stationary bike and works out that way. We go to yoga and pilates together with my aunt (also has MS). The instructor knows they have limitations and they all work around it. If you aren’t able to do some positions/exercises, they will modify it so you can still benefit from it.

They advised my aunt to lose 20 pounds and get more active. She is abiding by that plan for now and is doing well. She started going to the gym and does what she can. She easily trips and gets caught up in her own feet, so water aerobics is more her speed than the land classes.

Both my sil and aunt were informally diagnosed prior to the spinal tap. They had tell-tale changes on the MRI, but the diagnosis was confirmed by the spinal. Both are seeing a great doctor who specializes in MS here in Philadelphia. There was a wait list to see the doc, but they both eventually got in.

It’s not the “death sentence” it was 30 years ago. My sil was worried about having children. The doctors used to advise against it, but are telling her to go for it if that is what she really wants.

11

There are no oral drugs that are approved for MS in the United States, although there are a few in late-stage trials.

I take Copaxone, which is a daily injection, but has virtually no side effects. It sounds like it would be awful to give yourself injections every day, but it amazing how fast it becomes routine, and no bigger deal than brushing your teeth.

MTHFR is a genetic variant that affects clotting behavior. I found out that I have it when getting a thrombosis screen in my second pregnancy (because I had preeclamsia in the first). It sometimes causes some changes in the brain that can look like MS (sorry, I can’t find the paper I read on this - I’ll look and see if it’s on my computer at home).

I’m sorry you guys are dealing with this. If you search for “multiple sclerosis” here at the SDMB, you’ll find quite a few threads started by the newly-diagnosed, with some very good information about what to do next.

12

It’s never lupus. :slight_smile:

Seriously, I don’t mean to be flip - it’s just one of those memes that I find funny, and I’m hoping you’ll find some humor welcome right about now. Best of luck to you and your wife - here’s hoping that they nail down a diagnosis soon.

13

My brother in law has MS and did not start showing any serious physical symptoms until rather recently - he is wobbly and walks with a cane most of the time, a walker some of the time.

One thing that a lot of people don’t know about is the emotional/mental symptoms of MS, please be aware that they can be very tough on the person and the family members.

14

I think I have transitioned to a formal diagnosis now due to a recent flare and MRI findings (waiting for neuro visit). I delivered my daughter 15 months ago and had no complications during the pregnancy or immediately after. (Some articles say there’s a greater chance of flares in the first 6 months after, and some dispute that). I had a recent flare due to stress and overwork that lasted about a week. I would just suggest having a backup plan in case she gets a flare and can’t care for the baby, but otherwise the stuff I’ve read online backs her doctors up.

I’ll echo what others have said. It varies widely. I went for 5 years without a problem, and I rarely think about it between episodes. However, I do make an effort to watch my stress/overwork level because that’s been a trigger.

15

I’m sorry to hear that bup. I’ll give you my experience, but MS is really a very, very personal one, as its symptoms vary so much from person to person.

My wife has secondary progressive MS, which was diagnosed about 5-6 years ago. Hers first outwardly manifested itself in her waking up one morning with one of her eyes severely out of norm toward her nose, and concomitant double vision. The ER diagnosed her with a stroke in her optic nerve (I think), but after later MRIs it became an MS diagnosis. Once the diagnosis was made, other earlier issues which were written off, such as falling down due to her ankle giving out, took on a new meaning.

The eye problem went away after 6-9 months, but was followed later by some degeneration in her mobility which persists, loss of feeling in her legs and arms (they’re still not sure how it is she can walk at all; this lack of feeling also renders her unable to drive), and lately some occasional difficulty in swallowing. The most debilitating symptom, however, is really her fatigue. When she leaves the house – which is rarely – it is with a walker that allows her to sit when the need occurs. Her symptoms are greatly exacerbated by heat and especially humidity, which results in the air conditioner being on constantly in the bedroom.

She takes Rebif, or as it’s more familiarly known in the community, Rebarf. It is a three-times-a-week injection, and like the others in that family of interferon and interferon-like medications, the main side effect is flu-like symptoms and vomiting. As stated above these are very expensive, running around $2700 per month if without insurance (but there are programs to allay the cost that the drug company will hook people up with, if needed). The drug company also has nurses on staff that are available for consultation, and they will call every few months to check up on the patient and try to be generally helpful.

The Rebif seems to have slowed the number of lesions that appear each year on her MRI, which is good news, but the neurologist is also quick to mention that there’s no definitive correlation between lesions and symptoms.

In the case of the most common form, relapsing/remitting MS, the symptoms are wide-ranging but appear as exacerbations, often triggered by things like humidity as I mentioned earlier. If an exacerbation is caught early enough, they can treat the patient with IV corticosteroids over a period of a few weeks, which can sometimes shorten the duration or lessen the severity of the symptoms.

In rapidly-progressing cases, they can opt for a form of chemotherapy using a drug called Novantrone, which is used most often to treat cancer. This is an IV treatment that is given in the hospital over the period of a few hours every three months. It carries with it the same sort of side effects as most cancer drugs, although not as bad because the frequency is much less. My wife said that even though her hair thinned some during the treatment, that was the best she’s felt in quite a long time. Unfortunately there is a limit to the amount one can have during their lifetime, as it is apparently severely cardiotoxic, so it’s treated as a sort of “last-ditch” medication.

Wow, that’s a lot for a lurker to say! Don’t think I’ve “talked” that much here ever. Hope I’ve helped give a little more information, and I’ll be thinking of you and your wife.

16

My best wishes to your wife, bup. That’s a hell of a lot of stress to manage all at one time.

My husband was diagnosed with MS in his early 40s after developing a particularly virulent type of vertigo and having a couple of other equivocal symptoms (momentary partial loss of vision in one eye, for instance). The neurologist did an MRI that was read as ‘consistent with MS’ and gave us the grim diagnosis, and my husband was started on Copaxone, one of the injectable MS medications (for which his insurance company paid $1200 per month:eek:). He went along this way for several years (4 or 5), never having any increase in symptoms or change in his health status but still having occasional bouts of terrible vertigo. We were a little suspicious because his condition did not deteriorate or fluctuate at all in that time, so we arranged for him to have a workup at the Mayo Clinic. After three 8-hour days of tests and consultations, including a spinal tap, tilt-table testing, and brain scans, we received the news that he most likely had never had MS, that he probably actually had a form of migraine that causes vertigo. The doctors there were shocked that he had been diagnosed without analysis of his spinal fluid. While they can never tell him that he does not have MS (simply because of the nature of the condition), they think the likelihood is negligible.

Hearing that assessment, Purgatory Man, who is a Manly Man and likes nothing better than lifting heavy things and doing strenuous manual labor, looked like someone who’d been released from prison. The first thing he did was pack up his medication and syringes and take them back to the pharmacy for disposal.

My suggestion for you and your wife is that you get a second opinion, even a third opinion, and make sure that she receives all of the laboratory testing and imaging that is necessary for an MS specialist to make a confident diagnosis. MS is a difficult condition to diagnose, but with proper evaluation and accurate information, you’ll be able to come pretty damn close to an definitive answer.

17

Thanks, everyone. I appreciate all the thoughts and info. Second opinions are always a good idea, especially since my wife has always been hard to diagnose. She’s always had a weak immune system and had lots of labels over the years.

18

My wife was diagnosed last year with Sjogren’s Syndrome. She was originally suspected to have MS but some of the test results didn’t line up.

19

My wife has MS and has for about 8 years now. She has only had a couple of issues with it, one was numbness on one side of her body, the other was eye focus related. Both lasted about 3 weeks. I will send her a link to this question and if she has time she likely will post.

But to be honest it varies so much and is vastly different for everyone. My wife was heavy when she was diagnosed and decided to whip her body back into shape and I think in many ways that has helped her keep in under control. She takes a once a week shot that has the flu like symptoms described above. But other then that, you would never know she has MS as she exhibits no symptoms. But I do see little things like she gets tired easily, or heat takes her down quicker then other people, little things like that. But I am married to her and the average person would never pick up on the little clues.

Good luck and try NOT to read up too much on the internet on this. That is always the worse case scenarios and reality is very different. My wife told me she quit reading up on it as it just depressed her.

20

Did she get the spinal tap? How are you guys doing? I was just thinking about you and hoping you’re both OK.