Can You Die From MS?
by Amy
Most things I read say that you can't die from MS. I know people with MS and they are really sick. If they don't die from MS, what do they die from?
What can you do along with taking one of the medicines they have for MS?
REPLY:
Hi Amy,
You are correct, MS is not normally a direct cause of death. Not to frighten you, however, but deaths from complications of multiple sclerosis can and do happen. This subject is one that many, once faced with a diagnosis like MS, wonder about, especially when going through a severe exacerbation. You, as an MSer, may be reluctant to talk about it, but it's always in the back of your mind.
As an MS caregiver, I have thought about losing my husband to something like a severe infection, or a bad fall. When depression was a problem for him, I worried about his state of mind. I know of one MSer who is constantly choking because of swallowing problems.
If we look at all of the things that could possibly go wrong when you have MS, the complications from some of the symptoms, the number of possible ways to die adds up. The facts that we know about multiple sclerosis still say that most people with MS will never reach a stage where severe disability occurs.
The average life expectancy of an MSer is only slightly lower than for the general population. You, as an MSer, depending on how old you are, the treatment you are using, and whether it is working to slow down progression, may live as long as you would have without MS.
Or you could succumb to one of the things I mentioned before. If the average numbers for deaths in people with MS don't include deaths from falls, infections, suicides, or something else, then the percentages may be off. A report may list someone with MS as having died from blunt trauma to the head, which could have occurred from a bad fall (the result of balance problems). MS may not even be mentioned because it was not the cause of death.
While this subject is not a pleasant one for MSers to dwell on, it is something that no doubt will cross your mind from time to time, (possibly more often than that). So what can you do about it? Knowing the potential causes of death by MS complications, you can try to avoid as many of them as possible.
When we found out that infections could cause the death of someone with MS and that Cir is prone to infections because he self-caths, we became extra cautious. I wipe down the sink and toilet whenever I use the bathroom so that it is cleaner than normal when he uses it. He also is extremely careful about the steps he takes when he is preparing
to self-cath.
He drinks plenty of water to flush his bladder and self-caths at regular intervals so that his bladder doesn't get too full and back up into his kidneys causing a kidney infection. If he gets sick with any other type of infection, we have to make sure that he stays hydrated. He ended up in the ER once when he had a fever and had forgotten to keep drinking fluids because he was so sick.
Neither of us caught on until he was delirious with a high fever and losing fluids rapidly because he was sweating profusely. When I couldn't get him to make sense, I had to call the EMT. Because I couldn't move him alone to take him to the hospital, they took him in an ambulance. When he got there, he ended up with a foley (indwelling catheter) for a few days and an IV to rehydrate him.
Since then, we've learned to keep him hydrated especially when he is sick or feverish. Once the dehydration ball gets rolling, it's very difficult to stop it without intervention. We both try to keep an eye on anything that could lead to and cause a possible infection.
With that said, there are still many other things that can happen. He's very careful about not falling. He always uses a cane, walker, rollator, or wheelchair, depending on how he feels. When moving about the house, he tries to be mindful of where and how he takes his next step. He tries to plan out where he's going, look at what's around him before moving. This carefulness makes everything he does take that much longer, but he doesn't fall very often.
Ask yourself, what can you do to stay as healthy as you possibly can? What steps can you take to be as safe as you can? If you are depressed, have you talked to your doctor about it? Even being as healthy as you can or as safe as you can, doesn't mean you'll never have an exacerbation that may land you in the hospital. MS is like that.
You can only do so much. Sitting around worrying about how you may die is not healthy by any stretch of the imagination. Learning to live with MS and living life as best you can is what you should try to do.
Death is something that everyone must eventually face whether you have MS or not. But how we live is what matters most. Those who don't have MS will never know exactly what it's like to live with the disease. Not even those closest to you. That is something you, as an MSer, have to come to terms with.
It doesn't mean that you have to try and be the life of the party or a "Positive Polly". But the opposite extreme is not good either.
Akrista
