Quix.. This is a bit scary to me.

I don't mean to put fear into everyone but this disturbed me and I would like to know your opinion..

A fellow manager called me 2 weeks ago and said that his brother, who has MS and was diagnosed approx 2 years ago, was in the hospital.  His liver, kidneys, & pancreas were shutting down.  He died 5 days later.  When he called me he was asking if I thought it was MS related.  I didn't think so but questioned that maybe he wasn't having regular blood tests and asked if he was on injectables.  His brother didn't know.

I did talk to the brother yesterday and he said that he did die from MS.  He had a large brain stem lesion but also had some other auto immune problems.

I had a brain stem lesion that caused me to have TN and recently some heart rate issues.  I wore a monitor for a few days and it was normal.  I think we have ruled out everything else.  I do believe it is lesion related because it when I get overheated and all other old symptoms resurface, the heart seems to take off.  

Are brain stem lesions known to cause heart rate problems (and blood pressure) ?   Could it have caused this man's death or do you think other factors were involved.  I really apologize for bringing this up but it has me a bit concerned.  
The brother still did not know if he was on an injectable but did say that he was not following up for his regular appts.  He had become severley depressed and isolated.

I KNOW MS rarely kills but this hit close to home.  This man and I were diagnosed at the same time.  

[uk2]

I cant really answer this Quix.

But he didnt keep up with his appoitnemtns he seemed to of lost faith in the medical field or just got so depressed he couldnt see straight which is so sad to think of him like that.

I think it is a possibilty to die form MS more likely things that surround the MS have a greater impact on MS suffers like infection etc

But saying that it is now documented that you can die of M.E or C.F.S a lady had this put on her death cert so it must be possible to die of MS but if you take care of yourself stay close in contact with the dr and have regular medical checks i think that is a low possibilty and i guess we all have to die of something! but its scary take MJ i'm sure he died of lupus and not a drug overdoes he was dx in 2007.

Hope others will respond. Take care hunny.x

[Lulu54]

Dear poorkid,
From what you have described, I would say it is highly unlikely that he died from MS.  He may have passed from complications that are side effects of the disease itself.  The liver/kidney/pancrease involvement tells me there was something else going on.

Diabetes? Not following up with routine blood tests for liver damage from the DMD's?  Alcohol abuse?  

I will stand behind what I constantly tell others, MS most likely will not kill us, but can make our health situation very complicated.  We are quick to blame everything on the MS, and forget that our bodies are susceptible to other illnesses too.

Brain stem lesions can be especially nasty, so it is essential that you continue to work your treatment plan closely with your neurologist.

I'm sure others will weigh in here too- in the meantime I hope this gives you some of the reassurance you are looking for.

my best,
Lulu

[meg321]

I agree with Lulu and depression can be a killer.  If you give up it can make you sick...the thoughts that you put into your mind is what is produced in your life.

So if we don't think good healthy, happy thoughts it will create the same on the outside.

I think i got that right, this brain does not help anymore when it comes to talking/typing words.

hugs, meg

[jensequitur]

While MS can cause your heart to pound, it will not cause your liver to shut down.  There are autonomic functions that are controlled by the brainstem, like your heartrate and respiration, but the brain does not control the liver and kidneys - they're independent contractors, basically.

At least that's my take on the whole thing!

[doublevision1]

The first thing I thought was one of the points Lulu made, re: elevation of liver enzymes from one of the interferons.  Copaxone does not cause this problem so it will be helpful if the brother finds out if he was on injectable medication, which specific one he was prescribed, and whether or not he was monitored for this rare but serious side effect.

Given his depression, alcohol abuse is a fair question.  If an autopsy was done this should be able to be determined.

I have a large lesion on my brain stem and it is indeed nasty.  Was the cause of my severe double vision for over a year.  Good thing the brain is so plastic, I guess some rewiring occurred as this problem is about 95% improved.  In all my reading I have not come across anything with respect to brain stem lesions and the kinds of problems this gentleman suffered.

When I was in the hospital in 2007, killing time after my spinal tap as I couldn't get up and walk around, I picked up a newspaper to try to focus on something other than my imminent diagnosis.  I open the paper to a random page which happened to be the Obituaries, and the very first entry that my eyes focused on was for a woman in her mid-50's who "...died of MS"!!!    Just what I needed to see!   I was puzzled because even as early as it was in my own experience with MS, I had read enough to have learned that one doesn't die from it, but can of course from MS related complications.  I also knew that the average life span for patients with MS is not much lower than that of healthy individuals.  So reading this poor woman's obit didn't completely freak me out, but I did find it a little spooky given the timing.

One last word about average life span: the numbers today are of course based mostly on those who were probably dx'ed prior to the availability of DMD's.  So that average may eventually be even closer to or equal to the life span of healthy individuals.  

[poorkid]

Thank you for your responses.  I do know that although he was not a drinker, he was supposed to be having blood work regularly and never went in.  So that seems to say he was on the DMD's.  I probably won't find out any more because his brother doesn't seem to want to talk about it.

My neuro's nurse just returned my call and did tell me that yes, my heart rate issues can be aggravated by the heat but was more concerned with the blood pressure remaining consistently high despite my meds.  I will follow up with my primary.  I still think the heart rate is MS related but no one else seems to agree.   Again, I only think that because it only seems to be really bad now when I overheat and all the old symptoms resurface.

I apologize if I brought up a taboo subject but it really made me think.  Is this the reason that they want our blood work so often?  Can the DMD's really cause your liver to fail and then maybe the other organs follow suit?  

[sllowe]

Not taboo at all.

My thoughts are that if he had elevated liver enzymes from an interferon, once things got bad, he'd have gotten jaundice.  I was told "you'll know" if the enzymes get very high - high enough for major liver issues.  Monitoring is key though, so the flags go up earlier than that happening.

I can see where one can get complacent and not go to the Dr. I'll admit, I've missed appts, not made appts when I needed too, have put of flabs when I shouldn't have. Bad, bad, bad.

He could have been very bad off from his MS like the Dr. and brother said.  Though a secondary complication might have been the final culprit, the disease itself may have been the primary problem. Once we get imobile anything can happen.

Poorkid, you bring up some fears so it's a good topic.