Coping with MS diagnosis and symptoms?
January 19, 2010 6:19 PM   Subscribe

How to cope with a diagnosis of multiple sclerosis (MS) and the mounting symptoms.

First a little backgroud - I apologise for the length!

I am an early 20ies female diagnosed with highly active relapsing-remitting MS, with some worry that its primary progressive.

I've been on INF-beta-1a for 10 weeks (10 doses), and three rounds of oral steroid for acute relapses. I maintain a balanced diet supplemented with calcium and vitamin D as directed by my physician, exercise regularly and try to remain positive. I will be starting pulse-steroids, IV, once per month for 6 months due to the number and frequency of relapses. I am under the care of an excellent family doctor as well as a neurologist through an MS clinic. I had a few counseling sessions and did not find them to be helpful; I do have supportive friends and fiancee.

Questions -

I would love suggestions for coping with the fatigue and "mood symptoms". I also have sensory loss, vertigo and dizziness, sensory ataxia, and some problems with coordination - advice for dealing with those also appreciated!

1. I reacted poorly to the last dose of steroids and am now on prophylactic citalopram, as I am soon to be treated with pulsed steroids. However the citalopram is causing me to be agitated, and depressed - I was not depressed prior to the steroid treatment, and am having a lot of difficulty with suicidal ideation, general sadness, and crying jags. I am not acutely suicidal, and am aware that it is a manifestation of the medication. How to cope with the sadness? Tips to stop from crying?

2. I am exhausted. I am sleeping 10-12 hours at night, and napping 1-3 hours during the day. I am unfocused and sleepy when I am awake. This has been ongoing, but is worsening. Tips for being alert? For staying focused?

3. I am a type A personality, and am finding it hard to adjust to the constant changes of this illness - just when I get used to the "new" me, another symptoms appears or worsens. How can I cope with this?

Throw away email

Thank you!
posted by anonymous to Health & Fitness (14 answers total) 10 users marked this as a favorite
My wife has MS and the neurologist has her on provigil to help with the fatigue. We've had to go back and forth with our insurance company to get it paid for, but it really does seem to make a big difference for her.
posted by tdismukes at 6:31 PM on January 19, 2010

I'm not a doctor. This is not medical advice. This is just an anecdote. My ex-wife was diagnosed with remitting/relapsing MS in 1995. She treats the disease with Copaxone and has generally had good results, though she has some optic nerve involvement now and increasing tremor and weakness in one arm, as well as numbness in her feet and hands. After trying a bunch of different drugs and combinations of drugs
to treat her mood, lack of appetite, and general dysphoria, she decided to smoke marijuana. It helped her a lot. It isn't a cure, it isn't a wonder drug, it isn't the answer to everything. But her mood and appetite improved
tremendously. Unfortunately, she does not live in a state that recognizes that cannabis is an effective treatment for the symptoms of MS, so by using it she was breaking the law. The stupid, stupid law.
posted by BitterOldPunk at 6:49 PM on January 19, 2010 [2 favorites]

I am very sorry that you are dealing with this at this time in your life.

This summer I spent some time studying MS for a small company. Here are some interesting facts that I learned about the disease that is not in the conventional medical literature:

1) Exercise can help you reduce the symptoms of depression while also making relapses less common.

2) Interferon products generally will cause depression and increased incidence of suicides, but this is also caused by the disease itself. Some things to minimize this are to inject the product at night, and take it with some Tylenol.

3) Although it is a point of clinical controversy, not all interferons are created equal. The high-dose high-frequency interferons like Betaseron and Rebiff are more effective in reducing relapses. Although Avonex is only used once weekly, the literature I read suggests it is less efficacious.

4) In one study by one Dr. Ebers, many MS suffers were surveyed at the start of interferon therapy and then sixteen years later. Clearly the more frequently you use the drug, the more similar you will be to the lowest mortality group in this study.

5) All of the interferon reduce the number of relapses per a given time by about 30%. Tysabri will reduce this by about 66%, but carries the risk of of a kind of viral meningitis that makes it unacceptable except through a special program.

6) New drugs are coming out for MS - including some oral therapies including Fingolimod and Fumarate. The Fingolimod seems to inactivate some kind of receptor on white blood cells (sphingosine-1-phosphate) that makes them less active. It looks like a promising therapy. I think some mouse models actually demonstrated some possibility of the viral meningitis too, though so don't jump on that bandwagon too soon.

7) Don't let your doctor tell you that you need to switch therapy once neutralizing antibodies are present. In Australia, a pharmaceutical company did voluntary testing for neutralizing antibodies, and found that there is really NO DIFFERENCE in efficacy when neuralizing antibodies are present. The p-value was 10^-6 or something ridiculous (because a significant portion of the people using the drug were tested). So don't let the doctors tell you otherwise.

8) Also, a recent meta-analysis shows that Copaxone has no advantage over placebo. If I had MS, I would avoid that drug.

9) High doses of vitamin D, together with a low-calcium diet can actually reduce your involuntary movements.

10) In Germany, scientists experimented with triamcinolone acetonide (a steroid) injections directly into the MS brain lesions. This therapy works better than anything that is likely to come out over the next several years. It is expensive, but ask your doctor about it.

11) Read the book "Feeling Good" to help you with some of your depression - just because depression is an organic condition doesn't mean that you can't do non-pharmacologic things to help it.

12) Take an antidepressant that does not increase your risk of suicide like Citalopram. Lithium is actually the mainstay of therapy when one develops symptoms of depression with psychosis. It is the BEST drug for depression and the only drug to reduce the risk of suicide. I think its use is warranted. Call your doctor out on it. Harrison's Internal Medicine would agree - use lithium.
posted by verapamil at 6:50 PM on January 19, 2010 [9 favorites]

I am not a doctor, and this is not medical advice. Have you ruled out vascular problems?
posted by Soliloquy at 7:13 PM on January 19, 2010

In terms of finding ways to deal with the changes that are happening to your body: therapy. You have a chronic illness - there isn't any shame in talking to someone objective about it, who may be able to help you find coping strategies. My advice is purely anecdotal, but my mother has a chronic, progressive (but non-fatal) neurologic condition and it has changed her (and affected our relationship) immensely. Some of this is due to the medication she has been on, but much of it may have been alleviated if she (or our family as a whole) had been in therapy.
posted by honeybee413 at 7:39 PM on January 19, 2010

Talk to your doctor about taking a potassium supplement while you are taking steroids. Prednisone, for example, definitely strips the body of potassium, which leads to deprresion. Be sure to include a lot of bananas, grapefruit, etc in your diet.
posted by uans at 7:55 PM on January 19, 2010

Previously (previously) helpful.
posted by plinth at 8:02 PM on January 19, 2010

I am not a doctor, but a few things I have picked up.

1. If you are having ideation then you need to be working with someone who can monitor you. When I splurged and went to an big MS center they suggested I treat it (organic depression) using a dopamine reuptake inhibitor instead of/in addition to an SSRI. Ask someone who knows your case about that.

2. I did provigil for many years. It did help with daytime functioning, but after a couple of years at daily max I was a bit strung out. Life got better when I did more regular exercise, started using biofeedback relaxation techniques, and tried to normalize my schedule as much as possible. It wasn't until I had my sleep apnea treated that I went off the drugs overnight and have not looked back. Note that provigil also works on dopamine, so be sure you are working with someone who is paying attention to both physical and psychological aspects of your treatment.

As you have probably been told, there is so much variability in the course of the disease that nobody can predict an individual case; and you have probably noticed that no two people will give you the same advice. Good luck.
posted by cgk at 8:29 PM on January 19, 2010 [1 favorite]

My bf was diagnosed with MS. After struggling with it for three years, he's become suuuuper careful about what he eats. It's not just a "balanced diet" but no wheat and no refined sugar. The change is stark. If he eats any bread, he sleeps for the rest of the day. Eating gluten-free is sometimes annoying in restaurants, but it's really easy at home. There are a lot of substitutes and some of them taste even better than the original.
posted by ohisee at 10:13 PM on January 19, 2010 [2 favorites]

I have primary progressive MS which was diagnosed about 7 years ago. As you probably know there are no real treatments for PPMS at the moment although I've heard recently some trials have started for a couple of different drugs - in fact I was offered to go on one trial, but couldn't for various reasons.

You asked about fatigue, for me I deal with that by thinking what I want to do in advance. For instance, maybe I want to visit the supermarket in the afternoon. That means I won't be able to do any housework/gardening/etc in the few hours before I head off to get the groceries. It's a bit boring to have to plan like that, but I don't have an alternative.

Quite a few years back I was given modafinil (sp?) which supposedly helps some people with fatigue, I never noticed any improvement so stopped after a few months: I think my dosage was 100mg per day after starting on 50mg. But maybe it's worth asking your neurologist if it's likely to be any good for you ?

Generally I don't have a big problem with sleeping for very long periods, 8 hours and perhaps the odd short nap in the afternoon is enough for me.

The most helpful thing for me is to reduce the stress I encounter in my life as much as possible. That's obviously easier said than done, but stress really effects me badly.

I think it's important that I don't feel sorry for myself or become a broken record in boring everyone about my health problems. But I do have to endure friends/relatives giving me links or clippings from newspapers about the "latest" fantastic treatment, which always turns out to be snake oil or very old news, but it's done from kindness - so I appreciate the thought. The other thing I notice is that most people think MS is pretty much only a problem relating to mobility, which is obviously not the case.

For up to date news on new treatments etc. I occasionally read the UK MS Society website.

I'm not a neurologist or an expert of any kind, but I do wish you good luck.
posted by selton at 1:00 AM on January 20, 2010 [2 favorites]

Also anecdotal:

A good friend has MS (I don't know medical details) but she deals with the balance issues by training in karate, extensively. Her balance may be not great for a black belt, but it's awesome for someone who often can't feel her feet, and her neurologist is apparently constantly impressed by how well she's dealing, physically, with advancing symptoms.
posted by restless_nomad at 6:13 AM on January 20, 2010

What I said about grapefruit needs a caution: it can affect how some drugs are metabolized. Please, clear everything with your doctor.
posted by uans at 10:37 AM on January 20, 2010

The fatigue is the very worst part of this disease. The fatigue makes me feel like I'm not alive at all, or just barely conscious enough to be aware of all the living that I'm not doing. The fatigue is bone crushing and it makes me really fucking cranky because everything takes nuclear amounts of energy when I've got a thimble full. I know what I want to do, that the real me could grab that list of things to do and turn the world into a thing of beauty--but just looking at it under the suffocating cloud of fatigue I know that there's no way I'm even going to be able to pick it up. How do I not feel like a failure when I can see it that clearly? Sometimes the fatigue hits me so hard and so fast that I decide it isn't happening at all (and then I don't take any of the various forms of speed that are supposed to help me remain my normal type-A self when this happens). Sometimes I give myself permission to hibernate for a weekend and curl up with Bones or House re-runs and try not to feel too guilty about all the accomplishment that isn't mine. The miraculous thing that I desperately try to remember in my darkest hours is that no matter how shitty I feel, no matter how brutal or long-lasting the fatigue has been, I know that it will pass. It will pass.

But that leads to the second most shitty part of this disease, which is that most of the time you'll be walking around feeling awesome, vibrantly alive, capable of anything... and then suddenly your right leg goes out while your walking home in the thick of city commuters. There's nothing to hold you up but a greasy mailbox, and just that quickly you're reminded that yes, you really do have this serious fucked up disease and sometimes your body decides to be an asshole and you realize how powerless you are. So you try to look dignified while holding onto that mailbox, start searching for a cab, and hope you happen to have cash in your wallet. And there is no way to escape how vulnerable and tiny you feel locked in your psychotic, moody little body.

This disease fucking sucks. It does. It's different for everyone. It's different for me every year. And every time I have a new episode or am hit with a brand new wall of fatigue, I swear to God I feel the same way I did when I was diagnosed 9 years ago. I cannot believe it was that long ago. It still shocks me that I have this.

Anyway, here's what I have found helpful psychologically: denial. Seriously. Even my therapist approves. Our brains gave us the ability to look the other way sometimes when we need a break and you do not always need to embrace this disease or keep reminding yourself that you have it. I recommend you choose certain times to "work" on it -- times when you'll research which meds to be on, making doctor appointments, carving out time to yell at your insurer or the nurse whose assumption and hostility meant that you waited in a chemo treatment center with a pick line in for an hour for absolutely no reason because she forgot to fill out the Rituxan forms... these are all great people to get really angry at when they deserve it. But then shake it off. Take your Provigil, take your Ritalin, find a good preventative med for you, and get over feeling like a deranged Beverly Hills speed freak. Once you figure out your meds it is a massive relief. Some people figure that out quickly. I did not. It's something I'm still experimenting with, and I'm always 100% candid with those I'm closest to while in the midst of self-experimentation. Provigil can make you really short tempered (but so can being sleep deprived). Steriods made me vicious bitchy but I could tell it was the steroids so we were able to laugh about it. All of that interferon I started with made me even more weak and just flat-out miserable. If you are able to separate whether it's the drug or the MS making you wonky that helps a lot. It also really helps your family if you can joke about what the beast is compelling you to say (or do). [Yes, in my family roid rage is referred to as 'The Beast'.] I would also avoid taking steroids too frequently. They lose their impact over time and you want to reserve the ability to bring out the big guns if you ever lose sight for a while (God forbid). I also find it useful to think of the MS as a deranged character that's somehow broken into my body and figured out how to do some crazy shit from time to time. Finding ways to not take it too personally, to not let yourself feel like your whole body is letting you down -- that's crucial to me. Most of my body is pretty amazingly awesome. I just have a few obnoxious neurons who are trying to bring everyone else down...

And then, for me, when the fog clears, even if it's due to Ritalin or whatever, I am so crazy grateful to be alert and functioning again I am filled with ridiculous obscene joy and gratitude. So it's a cycle. And, sure, it's not an OMG OMG What's Coming Next I CANNOT wait?!?! feeling... (because what's coming next is never something you want in your life) But this cycle does make me crystal clear about who I am, who matters to me and what I will accomplish once I have the energy.

Anyway, sorry for the rambling (I'm in the midst of Provigil/Ritalin experiment #3 today which was great for energy during the day, but clearly not so great at getting me to be asleep prior to midnight). I hope some of this is useful to you. When I was first diagnosed I wanted nothing to do at all whatsoever with other people who have MS because theirs always seemed worse and scarier. If it makes you feel better I was diagnosed 9 years ago and can still walk 20 blocks no problem (perhaps even in my high heeled boots) and I feel completely normal about 85% of the time. Please feel free to memail me whenever. Best of luck in figuring out the best way for you to handle all of this nonsense. You can totally do this. It becomes easier as you accept that this is going to be a massive pain in the ass -- but really only when you have to deal with it.
posted by ohyouknow at 1:37 AM on March 12, 2010 [1 favorite]

Oh and by the way -- I've never ever been suicidal before in my life until one neuro (who we dubbed the steroid cowboy) wanted to do the same pulsing steroids thing with me. It literally made me insane. I have always been a ridiculously, almost annoyingly happy person, and suddenly there I was tearing up at my desk on the 32nd floor wondering how difficult it would be to break through the window. At least I had enough clarity to know that this voice or whatever in my head was clearly the steroids talking. This is another reason why I'd recommend going easy on the steroids. But of course I'm not a neurologist...

Bear in mind that different neurologists will have very different and very strong beliefs about how you should be medicating yourself. So along with feeling like shit, part of your job is to try to sort out their bias from the stuff that seems reasonable to you. You will also have to find a way to filter out family members (and strangers on AskMe) telling you how to cope with this. I have learned that if I really listen to my body, for example, I just sort of know which meds are good for me and which aren't. That sounds totally crazy, I know, but I've had such strongly severe negative reactions to so many of the meds I've learned to heed my body's warning signs. I would personally recommend that you do as much yoga as possible and that you find yourself a good acupuncturist. Those have been enormously restorative healing rituals for me.

I truly wish you the best of luck with this. And I'm sorry I was so crabby and negative in my previous post.
posted by ohyouknow at 9:19 PM on March 24, 2010

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