An important question
Epiphany
then the trolls began to come, and I left. Now I need some answers.
I was a caregiver/companion to a young man who was diagnosed with MS
in 1988. It mostly affected him cognitively. He was on Avonex, Xanax,
Amitriptyline, Marinol and Remeron, Prilosec as well as Crestor for
high cholesterol. His triglyceride levels were high also, and he was a
smoker.
Last week, on my birthday, he had intense upper body pain . . . both
arms, back, chest, neck, etc. I wanted to rush him to the emergency
room, but he elected to call his doctor. After waiting 45 minutes to
be called back, the doctor told him that if it was a heart attack it
would cause pain on his left side only; therefore, take Ibuprophen and
use heat. He had already taken a hydocodone, so did not. He fell
asleep and woke up feeling better. He described the pain as worse than
a Charley horse.
On the 22nd, he had a repeat of the terrible pain. Within a few
minutes his eyes rolled back into his head and his breathing became
labored. I called 911, had the downstairs neighbor call the local
Rescue Squad, but shortly afterwards he died in my arms.
My question is this: What is there that might be MS related that
caused the doctor to assume that the terrible chest pains could not be
a heart attack?? Have any of you experienced, or known of anyone, who
perhaps had an MS-related muscle cramping in the chest area so severe
that it compressed the heart and caused it to stop beating and the
lungs to stop drawing air?
Needless to say I, and his whole family, are livid with the doctor for
not recommending he go immediately to the emergency room when he was
called on the 16th. I'm more livid at myself for being so stupid as to
believe the doctor for saying such a thing. Unfortunately, I assumed
he knew what he was talking about.
Thanks. Lois
evilzona
> I used to come to this group frequently, then had computer problems,
> then the trolls began to come, and I left.
lol, now THATS funny!
evilzona
by the way lois.
that seemed like a terrible way to learn that doctors are far from
perfect.
Personally, I would have ignored the doctor and took him to the ER.
That only made sense.
Peter Black
wrote:
I have never heard of those symptoms associated with MS. I have just
read of them associated with heart attack:
http://www.heartfailurematters.org/EN/WarningSigns/Pages/Chestpain.aspx
Chest pain should ALWAYS be treated as serious, as it could indicate a
worsening of your heart failure angina or a heart attack. You should
immediately sit or lie down and rest.
http://www.healthcentral.com/heart-disease/patient-guide-44510-6.html
Pain spreading to the shoulders, neck or arms. The pain may be mild to
intense. It may feel like pressure, tightness, burning, or heavy
weight. It may be located in the chest, upper abdomen, neck, jaw, or
inside the arms or shoulders.
John Cawston
Hi Epiphany,
In earlier years, didn't this group talk about the "MS hug",
which seemed to be a muscle related, chest gripping, band-like
symptom? I don't think it caused death.
I don't know anyone who has experienced this, and certainly not
myself.
Heather
them...@webtv.net
Thanks. Lois
---
First of all, I'm sorry for what you've been thru, Lois.
Was "his doctor" his neurologist? Whether if it was a GP or PCM, it
seems the symptoms called for more than was recommended. Even his not
wanting to go to the ER was "typical" of a heart attack victim, and the
doctor ought to have known that! Plus, so many hours after a heart
attack a blood test can confirm it. Seems like that, at least, should
have been ordered. Was there/ will there be an autopsy? If one has MS
lesions in the pons, or brain stem, sudden death is a possibility. I
don't know if it would be painful. This area of the brain regulates
breathing, heartbeat, and blood pressure among other things.
I hope you will let us know, if you are given any further info from the
doctor. Again, I'm really sorry for the burdens you have had to bear.
magpie
BJ
So sorry for your loss.
I am fairly new to MS, however one thing my Doctor stressed as
important was not to assume all aches and pains are MS related and to
always contact a doctor for a second opinion. Seems to me you did the
right thing, in my opinion his doc made a grave error of judgment.
BJ
Epiphany
>---
>First of all, I'm sorry for what you've been thru, Lois.
>
>Was "his doctor" his neurologist? Whether if it was a GP or PCM, it
>seems the symptoms called for more than was recommended. Even his not
>wanting to go to the ER was "typical" of a heart attack victim, and the
>doctor ought to have known that! Plus, so many hours after a heart
>attack a blood test can confirm it. Seems like that, at least, should
>have been ordered. Was there/ will there be an autopsy? If one has MS
>lesions in the pons, or brain stem, sudden death is a possibility. I
>don't know if it would be painful. This area of the brain regulates
>breathing, heartbeat, and blood pressure among other things.
>
>I hope you will let us know, if you are given any further info from the
>doctor. Again, I'm really sorry for the burdens you have had to bear.
>
>magpie
No, his doctor was not his neurologist. He hadn't seen his neurologist
in years. She told him he didn't need to come back unless there were
changes in his condition. He was primary/progressive and his symptoms
were mostly cognitive. The changes that occurred were subtle and not
dramatic enough for him to see her. Anyone looking at him walking
would never know he had MS. This doctor, though, was the one who had
been managing him for many years, and although I wasn't impressed with
him at all he wouldn't hear to changing.
He had told me several times that since the heart is a muscle, and MS
primarily affected the mucle, when his end came it would be because
the MS had gotten to the heart.
Last year he had chest pains with jaw involvement and I took him to
the emergency room. They hooked him up to all the necessary equipment
and could find no indication that his heart had been involved. I think
this is why, when the pain came this time, it was "assumed" to be
something else even with the high cholersterol etc.
The medical examiner conferred with his doctor and they determine that
since there was "prior history" it would be declared a heart attack.
So, no, there could be no autoposy unless the family paid for it. His
sister-in-law called the doctor asking for answers, and was told that
their "medical technician" would return her call. She never did. I
don't expect a call from the doctor at all. This is the same doctor
that allowed him to go almost a week without his Xanax and
Amitriptylene and he went into withdrawal shock. The emergency room
doctor said THAT could have killed him.
Epiphany
wrote:
>Epiphany wrote:
>
>Hi Epiphany,
>
>In earlier years, didn't this group talk about the "MS hug",
>which seemed to be a muscle related, chest gripping, band-like
>symptom? I don't think it caused death.
>I don't know anyone who has experienced this, and certainly not
>myself.
>
>Heather
You're right! I had forgotten about that. It does make sense that the
doctor was assuming that this was what was happening, especially since
test last year showed no heart involvment when he had chest pain.
Epiphany
wrote:
>Hi Lois,
>
>So sorry for your loss.
>
>I am fairly new to MS, however one thing my Doctor stressed as
>important was not to assume all aches and pains are MS related and to
>always contact a doctor for a second opinion. Seems to me you did the
>right thing, in my opinion his doc made a grave error of judgment.
>
>BJ
I've know of people who blamed themselves when a loved one died, and
realized it was one of the reactions to expect, but in this case I
will always feel responsible and rightly so. But I agree that his
doctor shares this responsibility, because his health was in his
hands. But as a friend said, medicine is not an exact science and most
of the time, judgments are made based on guesses and past experience
and are often wrong. Just not usually fatal for someone.
Thanks.
Epiphany
I'm glad I could give you something to laugh about. Laughter is
supposed to be very good for the soul, and both emotionally and
physically healing. The more you can get of it the better.
Epiphany
comes way to late to be of much use!! I certainly am now far wiser,
and perhaps my experience will influence someone else to make
different choices.
There is without question an epedemic of heart attacks. Mark was only
46. His older brother died January 9 last year from one, no prior
history of heart trouble -- 55 years old. Another friend literally
dropped dead at the same age, no prior history. Three people in town I
didn't know personally, the same story. I'm really not a bit surprised
it happened to him with his horrible eating habits and smoking.
Nothing I could say or do would make him change, as he wanted to enjoy
his simple pleasures. I guess in the final analysis, we make our own
choices early in life and when we get older we have to deal with the
consequences.
BJ
It really sounds like there were so many complex variables involved, I
hope in time you forgive yourself, for what its worth I forgive you.
BJ
On Dec 27, 10:31 pm, Epiphany <ltaitgueL...@sover.net> wrote:
> On Sat, 26 Dec 2009 22:55:40 -0800 (PST), BJ <bjwig...@gmail.com>
evilzona
> On Sat, 26 Dec 2009 14:35:30 -0800 (PST), evilzona
>
> >On Dec 26, 1:32 pm, Epiphany <ltaitgueL...@sover.net> wrote:
> >> I used to come to this group frequently, then had computer problems,
> >> then the trolls began to come, and I left.
>
> >lol, now THATS funny!
>
> I'm glad I could give you something to laugh about. Laughter is
> supposed to be very good for the soul, and both emotionally and
> physically healing. The more you can get of it the better.
I wasnt laughing at your situation, its obviously very trajic.
The fact that you felt a need to preceed your story it with that troll
remark was ridiculous.
evilzona
>
> - Show quoted text -
you forgive her?
Hey look everybody, Gods name is BJ!
BigArtie
<them...@webtv.net> wrote in message
news:503-4B36...@bsg-storefull-3111.bay.webtv.net...
>
> ---
> First of all, I'm sorry for what you've been thru, Lois.
>
> Was "his doctor" his neurologist? Whether if it was a GP or PCM, it
> seems the symptoms called for more than was recommended. Even his not
> wanting to go to the ER was "typical" of a heart attack victim, and the
> doctor ought to have known that! Plus, so many hours after a heart
> attack a blood test can confirm it. Seems like that, at least, should
> have been ordered. Was there/ will there be an autopsy? If one has MS
> lesions in the pons, or brain stem, sudden death is a possibility. I
> don't know if it would be painful. This area of the brain regulates
> breathing, heartbeat, and blood pressure among other things.
>
> I hope you will let us know, if you are given any further info from the
> doctor. Again, I'm really sorry for the burdens you have had to bear.
>
> magpie
>
The pons and brain stem is where my lesions are located.
BigArtie
"evilzona" <davei...@gmail.com> wrote in message
news:ac584c3d-9576-4e1d...@j14g2000yqm.googlegroups.com...
some say they want the troll stuff to stop
then someone like Epiphany comes along
and throws gas on the fire
BigArtie
lol
OUS
Not a silly phone call. No doctor should ever give medical advise on the
phone.
A number of poor decisions cost this man his life.
Merry Christmas.
OUS
"Epiphany" <ltaitg...@sover.net> wrote in message
news:0rkcj5tuq0arga7a1...@4ax.com...
Epiphany
You call it gas on the fire. I call it merely an explanation of why I
stopped checking in, because there was too much to weed through to get
to the parts that were relevant to me. I don't care if trolls want to
troll. I don't complain about it, I just decide to stay or leave.
evilzona
> On Sun, 27 Dec 2009 13:35:13 -0500, "BigArtie" <XXX@.com> wrote:
>
>
> - Show quoted text -
you opened the thread complaining about it.
I'm sorry for your loss, but you're just another fucking phony like
pretty much everyone else here.
Lurker
Thanks for sharing your story and feelings, I believe many people
definitely myself, gained a great deal from you sharing such a
traumatic experience. I hope you will share your story on other ms
sites to get this very important message out, it could save many lives
in my opinion. You will also most likely receive warmer welcomes in my
opinion.
Please do not take evilzona's comments to heart, I have the feeling
evilzona bullies the posters on this site, were as soon the only
posters left will be evilzona and bigArtie who tends to just agree
with everything other people say, making himself feel big and others
small.
BJ
On Dec 28, 6:17 am, Epiphany <ltaitgueL...@sover.net> wrote:
> On Sun, 27 Dec 2009 13:35:13 -0500, "BigArtie" <XXX@.com> wrote:
>
> >"evilzona" <daveino...@gmail.com> wrote in message
> >news:ac584c3d-9576-4e1d...@j14g2000yqm.googlegroups.com...
> >On Dec 27, 7:32 am, Epiphany <ltaitgueL...@sover.net> wrote:
> >> On Sat, 26 Dec 2009 14:35:30 -0800 (PST), evilzona
>
> >> <daveino...@gmail.com> wrote:
> >> >On Dec 26, 1:32 pm, Epiphany <ltaitgueL...@sover.net> wrote:
> >> >> I used to come to this group frequently, then had computer problems,
> >> >> then the trolls began to come, and I left.
>
> >> >lol, now THATS funny!
>
> >> I'm glad I could give you something to laugh about. Laughter is
> >> supposed to be very good for the soul, and both emotionally and
T
evilzona
>
>
> - Show quoted text -
thank you God for those words of wisdom.
BigArtie
"Lurker" <ric...@gmail.com> wrote in message
news:0cc90f0b-ba83-4836...@s31g2000yqs.googlegroups.com...
Hi Lois,
Thanks for sharing your story and feelings, I believe many people
definitely myself, gained a great deal from you sharing such a
traumatic experience. I hope you will share your story on other ms
sites to get this very important message out, it could save many lives
in my opinion. You will also most likely receive warmer welcomes in my
opinion.
Please do not take evilzona's comments to heart, I have the feeling
evilzona bullies the posters on this site, were as soon the only
posters left will be evilzona and bigArtie who tends to just agree
with everything other people say, making himself feel big and others
small.
BJ
I tend to agree with everything other people say? On the contrary.
evilzona
bj obviously confusing warmer welcomes with phony ones!
These people dont know you very well, do they artie?
They sure do pretend to.
Epiphany
wrote:
>Hi Lois,
>
>Thanks for sharing your story and feelings, I believe many people
>definitely myself, gained a great deal from you sharing such a
>traumatic experience. I hope you will share your story on other ms
>sites to get this very important message out, it could save many lives
>in my opinion. You will also most likely receive warmer welcomes in my
>opinion.
I would like for this experience to have some positive result, if at
all possible. I would not know where to go, however, so if you could
post some links or email me directly, perhaps in time I will do that.
Thank you for your kind words. They are greatly appreciated.
BigArtie
No, they don't me.
BJ
Hi Lois,
Sure, you can send me an email at bjwi...@gmail.com
I will be happy to reply with a few links.
BJ
Tee
your post, what a tragic way to lose your friend.
I've heard of what's been called the "MS Hug" where the pressure around the
chest area can sometimes feel like a heart attack. I've had pressure there,
but never to the extent that I thought I was having a heart attack. I wish
the doctor would have taken you serious when you called and had you
immediately go to the ER. Perhaps it *was* a heart attack, guess you'll
never know.
What did the death certificate list as the cause of death?
Again, I'm so very sorry for your loss.
Tee
"Epiphany" <ltaitg...@sover.net> wrote in message
news:0rkcj5tuq0arga7a1...@4ax.com...
>I used to come to this group frequently, then had computer problems,
Epiphany
>Hi Lois, it's nice to see you here again, I'm sorry about the reason for
>your post, what a tragic way to lose your friend.
>
>I've heard of what's been called the "MS Hug" where the pressure around the
>chest area can sometimes feel like a heart attack. I've had pressure there,
>but never to the extent that I thought I was having a heart attack. I wish
>the doctor would have taken you serious when you called and had you
>immediately go to the ER. Perhaps it *was* a heart attack, guess you'll
>never know.
>
>What did the death certificate list as the cause of death?
>
>Again, I'm so very sorry for your loss.
>
>Tee
You're right, we will never know absolutely for sure. I haven't seen
the death certificate yet but understand from the funeral director
that they listed it as a heart attack. The medical examiner, emergency
room physician and his personal doctor based the judgment on "prior
history" even though he had no prior heart disease history. The one
previous incident of chest pain showed no heart damage on all the
emergency room equipment so wouldn't think that would qualify as
"prior history". I'm assuming they are taking into account the high
cholesterol and triglycerides. But in the final analysis, I suppose
you could reason that if it WAS a very severe MS Hug, so severe it
compressed his heart, then it was in fact a "heart attack" for
diagnostic purposes. Do you have idea what the protocol is for
treating the MS Hug? Thank you for responding.
Kevin
> Do you have idea what the protocol is for
> treating the MS Hug? Thank you for responding.
>
IV Steroids in my case. Mine wasn't severe and in hindsight I wouldn't
do the treatment again...a case of the treatment being worse than the
symptom.
Kevin
Epiphany
wrote:
I guess the doctor's recommendation of Ibuprophen and heat compresses
would not indicate he thought that's what it was, then. Thanks. Either
that or he had no understanding of the level of pain that he was in.
Tee
Like Kevin said, I would think steroids would be the first course, but that
would (probably) only be administered by his neuro. I'm sure the ER doc had
no clue, or wasn't informed, of your friends severe case of MS. Steroids
have helped me in many ways a lot of times, but I seem to be paying for it
now, and I don't know if they would have helped or hurt your friend.
Keep your heart full of the good memories Lois.
Tee
"Epiphany" <ltaitg...@sover.net> wrote in message
news:9mdlj5hcshkcr7k63...@4ax.com...
<snip> Do you have idea what the protocol is for