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Doctors told us it was not Fatal.

When my father was first diagnosed at age 50, his symptoms were mild. His balance was off a bit. We thought he needed glasses. My first question was “is this disease fatal?”. My family was told no, it was managable, but could get worse over the years. Within 6 months Dad was in a wheelchair, in one year he was bedridden, incontinent, no bowel or muscle control, and could not swallow or talk. Despite every treatment and physical therapy known to man. We went everywhere, Mayo Clinic, you name it.

My Dad died at age 51 as his lungs and diaphragm stopped working, there was no muscle control to maintain breathing so without a permanent ventilator and feeding tubes my father could not live. Soon after being bedridden secondary problems developed and his kidneys and other organs shut down one by one.

So the bottom line is that SEVERE, AGRESSIVE MS can be fatal. What is ironic is I have had several talks with doctors since my Dad’s death and was told it was NOT FATAL! Well my father is still quite deceased. It seems even the doctors do not have a clue and are still guessing about this disease. Some have told me I have a 1/4 chance or receiving the gene for it, others say that is still unknown. I noticed even on this site, there is no mention that this can be a short term fatal disease.

Not to scare anyone, just giving the facts, first hand, it can be fatal in a very short amount of time.

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Comments

  • William
    5 years ago

    First off I would like to say I’m sorry for your loss. When I was diagnosed with MS I was told the same thing, it’s not fatal. Well over the years, and after much reading, I’ve discovered how untrue this is. Although it’s rare, it does happen that MS can be fatal. By declaring this from the beginning though it can cause a lot of unnecessary fear in the newly diagnosed patient, since in the vast majority of cases it isn’t fatal. I think their refusal to acknowledge this rarity though comes out of their fear to admit they actually know very little about this disease. They have no idea what causes it, even with the many theories being investigated today it’s still just a bunch of guess work. We turn to them for answers. We want to know why me, what do I do now, what can I expect next? That list is endless, and yet they can’t positively answer what to do for any of those questions. It all boils down to the fact that MS is a miserable disease, both for the patient and the doctor. For the patient that has to live with the debilitating effects of this disease, and for the doctor’s frustration in their inability to effectively treat it. Maybe some day they’ll have the answers to all our questions, maybe the day will come when they can truly say MS is not fatal for all of us.

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