Wife may have MS

March 22, 2007 6:34 AM

MSFilter: My wife, who is only 30 yrs old may have MS. They have found spots on her brain that have demyelination. We just found out about this so we dont have an official diagnosis yet. My question is how can help her with this? Be there for her while were waiting? Keep her spirits high? **Additional question...What else could she have? Anything else demyelination could point to?
posted by flipmiester99 to health (11 comments total)

First off, confirm the diagnosis with a second opinion.
posted by By The Grace of God at 6:52 AM on March 22, 2007

IANAD, but if someone here is then I suspect they'd struggle without her case notes.

The danger with asking the question is that you could get back all kinds of answers. Then you end up worrying that if it isn't condition x it'll be disease y or z and you scare yourselves!

So for your own sanity, wait until the diagnosis is confirmed before deciding what to do next. Easily said, but true. Just curious, but has she had any other tests like a lumbar puncture?

Now if it is MS, the best thing you to do is learn about it. Couple of sites worth looking at are:
MS Society
Jooly's Joint

They're UK sites but plenty of links to keep an inquiring mind happy wherever you are. The MS Society site is excellent though. I recommend it.

Until you get the diagnosis, just listen if she needs to talk and don't try to 'solve' any problems. It's a scary time - I went through it in 2001 - although they didn't tell me they were looking for MS until all the test results were in and they'd confirmed it!

Oh, and have a handy supply of tissues and a good sense of humour. You'll need both..
posted by Nugget at 7:33 AM on March 22, 2007

In the case of MS, a second opinion doesn't generally equal a finite diagnosis. Unfortunately, it's just not that simple. Usually several incidents or "attacks" along with testing (the MRIs, spinal taps, scans, etc), the details of lesions and the elimination of other ailments brings a neurologist to the conclusion of MS. I know this because a little over a decade ago, when I was in HS, they were unsure if I had MS or my body's immune system attacked my body instead of a virus I was getting over. I was in the hospital for a few weeks, treated with steroids intraveneously, monitored by specialists on an outpatient basis, told what to look for in the future and have gone with that since. A real full diagnosis tends to be basically a waiting game to see what your body does, if it does anything again. Thank God, I haven't had any attacks to speak of. There are moments, still, where any run-of-the-mill minor tingling (carpal tunnel, foot falling asleep) freaks me out a little. I don't know if you ever get over that.

Certainly, see other doctors and neurologists. To answer your questions as far as helping her, I think the best thing you can do is just be there for her and keep positive. It's what my family did for me, and what I try to do even now. There are many variations on MS.

As far as other issues of demyelination... Your Google is as good as mine, but I'm not a big fan of diagnosing via search engine. But since neither of us are doctors, maybe speak to some neurologists and specialists and ask them what else her symptoms could indicate. The best thing to do is speak to the doctors and get their opinions. They also might be able to direct you to support groups. It's difficult, I've been there. I wish you both well and will keep you in my thoughts. I don't know if I can be of any further clinical help, but my email is in my profile.
posted by jerseygirl at 7:46 AM on March 22, 2007

In some ways, I think waiting for a diagnosis is the hardest part. There are all sorts of concrete steps you can take when you have a diagnosis, but the waiting period feels like limbo. (I don't have MS, but it was one of the things they had to rule out when I got diagnosed with a different autoimmune disease.)

Keeping her spirits high is good, but you also need to give her (and yourself) permission to freak out. There's a kind of cult of positivity around illness that, I think, sometimes makes people feel guilty for feeling what they're feeling. You're allowed your messy emotions. You should also, though, reassure her and yourself that you can deal with this, whatever it turns out to be. It's a challenge, but it's one that you're both up to.

This is, I think, a hard thing to give advice on, because how you want to deal with this will depend a huge amount on your personalities. Some people would prefer not to think about it very much until they have a better sense of what's going on, and some people feel more in control when they start acting on the information that they have.

One thing to do is contact the local MS society. They probably have resources for people in the diagnosis process, and they'll also probably have information about other diseases that cause demyelination. It might be useful for you to talk to people who have been in your shoes, and they could probably set you up with that kind of support. (It also might not be, and don't feel any pressure to do so if you don't want to.)

Good luck, and hang in there!
posted by craichead at 7:46 AM on March 22, 2007

Previously helpful, especially Blindsided.
posted by plinth at 7:48 AM on March 22, 2007

flipmeister - you need to elaborate more on why your wife had the MRI, and if possible, the specific verbiage of the MRI report. "White-matter lesions" are reported all the time on brain MRI's, given their current sensitivity. MS is also mentioned in the radiologist's differential because it is their job to mention every possible diagnosis based on what are often normal but superfluous findings hat occur in the aging brain.

Hang in there. Get in to see the best neurologist you can, and remember that MS is an incredibly variable, often very treatable and manageable condition.
posted by docpops at 9:38 AM on March 22, 2007

This doesn't exactly answer your question and probably won't be all that helpful (So why do I feel the need to mention it?) I have a good friend who was diagnosed with MS 20 something years ago. Over the years her symptoms worsened to the point where she was wheelchair bound. A couple of years ago they discovered she was misdiagnosed and actually had Celiac. She changed her diet and within days the improvement was miraculous. This almost certainly isn't the case with your wife (how would I know, IANAD) but I felt compelled to mention it.
posted by Carbolic at 9:43 AM on March 22, 2007 [1 favorite]

MS isn't well understood and winds up manifesting itself differently in a lot of different people. I had a boyfriend whose mom had MS when I was in college, and I have a good friend who has MS now. Im aware that you may not even have a solid MS diagnosis, but my advice is catered towards the "what if it IS MS?" direction. There are a few things it's probably a good idea to do now.

- stress to your wife that whatever happens you'll get through this together. MS ends a lot of marriages which is unfortunate but true. Try to be extra-super-team-player on this especially at first. Reassure your wife that you love her no matter what, in actions and words.
- make sure your ducks are in a row insurance-wise. because MS is different in different people, sometimes it doesn't fit handily into little boxes on insurance forms. Make sure you guys are covered and stay on top of all your medical-insurance stuff (paying claims, getting reimbursed, etc) if you don't have a good system, GET a system. You can read my friend's small essay on dealing with insurance as his MS was progressing.
- look into alternative therapies in addition to getting good medical care. Sometimes people find that changes in diet and environment can really matter, so read up on them. If your doc isn't giving you advice in that direction, try to get a referral to one who does, or just read up on that stuff on your own. There is no reason not to look into diet and etc in addition to pursuing treatment if the two don't conflict.
- find a support group. you don't have to go now, your wife doesn't have to go now, but it would be nce to know what the network looks like at a point in time where you might want their help. There are different networks for patients and caregivers sometimes, consider the possibility that you may wind up needing your own sort of support further down the line.
- start looking at your surroundings with an eye towards accessibility. If it turns out that your wife has MS and may wind up with some physical limitations, could you continue to live where you live now? What might need to change? This is something that, even if she had MS, might not need to change for ten years, but it might be sooner and it's good to think about it.
- do you want kids? I don't know anything about your situation, but if kids are on the table generally and your wife may have a degenerative disease, sooner is preferable to later. My friend is the father of two wonderful children and has an adoring wife.

That's off the top of my head thinking there. Feel free to drop my friend an email, I think he's often willing to talk about MS type stuff. Best of luck, this waiting out the diagnosis part is one of the hardest parts of all of it.
posted by jessamyn at 10:08 AM on March 22, 2007

I have a friend with MS, and one of the big things she is supposed to do is exercise. The problem is that she still has issues with making herself do it every day. If you really wanted to *do* something, maybe you could take steps to improve your diet and exercise with her daily. Do those things with her, so that it feels like something you're both doing together.
posted by JamesToast at 2:53 PM on March 22, 2007

I'm 22, and I was diagnosed with MS three years ago. This is all-too fresh in my mind. Adding to the great advice others have given previously:

The best thing that you guys can do is to educate yourselves as best as possible about not just the effects of the disease, but more importantly, on all of the treatment options available to her. (As the other posters have mentioned, your wife is going to need a battery of other tests, and at least two MS flare-ups, to confirm a diagnosis.) Reading through information about what could happen given the progression of the disease is enough to make anyone give up without anything else happening. But by learning about the different medications on the market, and beginning to mentally-prepare herself for the very-real possibility that she may have to begin self-injections sometime soon, will help her to feel more in control of her disease, even if she's not on a medication.

The waiting period before diagnosis and treatment is the worst part. When I was diagnosed, I'd had a single lesion showing on my MRI, and one period of sensation-loss (my face went numb). Until a second lesion showed up or I lost some other kind of sensation, I was in this MS limbo, where the doctors couldn't do anything for me. It was during this time that I began feeling extremely depressed, and developed an anxiety disorder. Be there for her during this time as best as you possibly can. (For me, ice cream and The Lion King helped, but, YMMV.) My neurologist's office has a therapist who specializes in treating patients who have been newly-diagnosed, or who are in the process of being diagnosed with, neurological problems, and he was absolutely wonderful with me when I thought I was losing my mind as a result of all this. If someone similar is available to her, suggest that she go, if things begin to seem too overwhelming.

But, above all, try and keep a sense of humor as best as you possibly can. You still don't know that it's MS, and hopefully, it's not -- but if it is, humor will be your greatest weapon.
posted by Maya Cecile at 3:31 PM on March 22, 2007

MS ends a lot of marriages which is unfortunate but true. [...] Reassure your wife that you love her no matter what, in actions and words.

I just wanted to second this. My MS diagnosis was far, far easier than my divorce a year later, mostly because I thought my husband and I would be facing the disease together.

I was diagnosed with MS four and a half years ago, and I've yet to have another relapse. Lifestyle stuff is of course really important: I try to eat well, stay active physically and mentally, and sleep as much as I can. A sense of humor is, like others have mentioned, really important. But (and I can't emphasize this enough) taking medication consciensciously is the biggest and most powerful part of treatment. MS is a very different diagnosis now than it was twenty years ago, because the medications make the progression of the disease significantly slower.

If your wife's diagnosis is confirmed and she's started on medication, you can help her a lot by getting involved in that. The current treatments are all given by injection, and people learn to inject themselves. The drug manufacturer will send a nurse out to your house to teach her how to do it; you can learn, too, and offer to inject her if she's tired of doing it herself. Learn about the side effects of the medications (mostly flu-like symptoms after injection, which get milder and milder as time goes on) and how to help her with those. The meds can be un-fun, but they work and I can't overstate how important it is that she take them. I'm sure it's a big part of why I still feel so healthy now.

My email address is in my profile, and you're both welcome to email me if you'd like.
posted by jesourie at 6:15 PM on March 30, 2007