Talk Cancer

Question:

"John Cawston" <rewar…@ihug.co.nz> wrote in message

news:3F2EE641.3978F480@ihug.co.nz… – Hide quoted text — Show quoted text -> Craig Garrison wrote: > > I also believe that MS has made me more tolerant of pain.; not just > > where I’ve lost sensation, but everywhere. > > As an example, after my cancer surgery I quit taking the pain > > medication the first day because it interferred with my ability to > > walk.  The surgery was on my face, and was rather extensive.  I had > > pain, but it was merely annoying.  At my next check up the nurse was > > surprised that I could do that. > > However, it might not be the same for all MSers because my > > nuerologist’s nurse is always surprised by how much "pain" I can take. > > (I put pain in quotes because it’s not painful to me though the nurse > > expects it to be.)  This rreasoning assumes that she is comparing me > > to other MSers and not the universe of my nuerologist’s patrients. > > Craig > For all that, MS didn’t entirely mask all the pain. I certainly felt the > removal of the drainage tubes which had stuck on entrance, and curled > inside !! Ouch, ouch > Heather

I broke a bone in my hand.  The pinky bone.  compound spiral fracture.  I was playing Goal Keeper, blocked a shot, it bent my pinky so far back the ball hit the end of the last hand bone, crushed it, and hooray I saved the day.  But had a miserable break the hurt like hell.  And it was my numb hand.  Boy I wish that the pain had been lessened by the MS.  Had to have surgery 2 weeks later after the swelling went down.  No such relief.  still couldnt feel the keys on the keyboard to save my life but I could sure feel pain.  But priorities ya know.  We won the game and I got three brand-spankin-new titanium screws in my hand.  Fair trade. Rob

Response:

Not on my opinion. I wrecked my neck back in ‘97 and when I developed this other stupid disease the pain became unbearable. Yuck

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I also believe that MS has made me more tolerant of pain.; not just where I’ve lost sensation, but everywhere. As an example, after my cancer surgery I quit taking the pain medication the first day because it interferred with my ability to walk.  The surgery was on my face, and was rather extensive.  I had pain, but it was merely annoying.  At my next check up the nurse was surprised that I could do that. However, it might not be the same for all MSers because my nuerologist’s nurse is always surprised by how much "pain" I can take. (I put pain in quotes because it’s not painful to me though the nurse expects it to be.)  This rreasoning assumes that she is comparing me to other MSers and not the universe of my nuerologist’s patrients. Craig On Fri, 01 Aug 2003 22:04:46 +1200, John Cawston <rewar…@ihug.co.nz> wrote: – Hide quoted text — Show quoted text ->A few of our MS members believe that MS disguises, or masks >the true degree of pain. Has anyone any views on this? >I, can personally vouch for this, as I have just spent over >half a month in hospital, recovering from a perforated, >abcessed appendix which had also stuck to other organs. >Really, I should have been in extreme pain, but all I could >feel was a slight dull pain when pressed, and a bit sitting >and rising from a chair. So I grudgingly took myself off to >the doctor, only to be sent to hospital for more tests, and >never got out of there for 18 days !! Felt like an >overstayer  The op took 3 times longer than normal, all >that unpicking beforehand I guess, then later massive pelvic >infection set in, with temps yo-yoing for days. After many >bags of antibiotics, and drainage tubes and bags, etc, I am >finally HOME. >My point is  - MS masked that pain big time, otherwise I >would have been rushing to the doc days ago. >Two good points- I lost a stone in weight, and now have a >free lady cleaner for 6wks, for 2hrs per week. I could get >used to this!!:) >For those of you who don’t know me, I have PPMS for 16 yrs >from NZ, am basically a lurker, but when I do post, it’s >major >Heather

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- Hide quoted text — Show quoted text -Craig Garrison wrote: > I also believe that MS has made me more tolerant of pain.; not just > where I’ve lost sensation, but everywhere. > As an example, after my cancer surgery I quit taking the pain > medication the first day because it interferred with my ability to > walk.  The surgery was on my face, and was rather extensive.  I had > pain, but it was merely annoying.  At my next check up the nurse was > surprised that I could do that. > However, it might not be the same for all MSers because my > nuerologist’s nurse is always surprised by how much "pain" I can take. > (I put pain in quotes because it’s not painful to me though the nurse > expects it to be.)  This rreasoning assumes that she is comparing me > to other MSers and not the universe of my nuerologist’s patrients. > Craig

For all that, MS didn’t entirely mask all the pain. I certainly felt the removal of the drainage tubes which had stuck on entrance, and curled inside !! Ouch, ouch Heather

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Unfortunately, it is not only MS sufferers who deal with doctors who refuse to acknowledge their pain.  I spent 7 years trying to get help for my husband’s neck, shoulder, and back pain after he fell off a wall and landed on his head.  Now it’s my turn, and he’s the one calling the neuro asking them point blank, "I can’t believe you haven’t prescribed anything for her pain!"  Which sent the nurses at the office running to the doctors and running for my file and making 5 phone calls to me (at work with clients) to make sure I was okay (I wasn’t, but gotta work, ya know?) and calling in Flexeril for me until I could get in to see the neuro again.  Wow, that was service!!  I wish hubbies neuro would have been half that compassionate;-)  Maybe wouldn’t have had to go through the alcohol abuse, DUI arrest, lost job, move 3000 miles for a new start, etc.  See what problems getting a little acknowledgement can avoid! Kelly rosedawn_sc…@yahoo.com (rose dawn scott) wrote in message <news:cac53056.0308040756.530f9a29@posting.google.com>… – Hide quoted text — Show quoted text -> Nice But Dim <stunospam…@netcomuk.co.uk> wrote in message <news:qjuniv877qh62hfh3o2ondh6ucmi22pub8@4ax.com>… > > Ha this is a good one to get me angry. > > In the UK somewhere in the Mills & Boon > > medical books that Neurologists get told to read > > is a paragraph that states. "MS is pain free, > > once a nerve has been damaged by MS it is > > pain free, a muscle damaged by MS is pain free" > > So QED MS is a pain free disease. > that one makes me boil too, but we don’t hear it too often in the u.s. > anymore. my 1st three neuros, including the guy who’s still my doc, > all said ‘there is no pain with m.s., only stiffness.’ the first guy > believed in steroids, bed rest, and keeping the poor invalids ’stress > free,’ which meant lots of tranqs and muscle relaxers. the 2nd one > believed people with m.s. were a bunch of babies, and got me hooked on > valium, then left me to withdraw cold turkey by cancelling my refills > when i dared to question her treatment by saying i wanted to get > another opinion. > neuro no. 3, who i’ve been seeing for over 10 years now, first said i > must have ‘a bad back or something,’ but then had the grace to > apologize to me AFTER the U.S. M.S. Society changed its position that > ‘pain is not usually a factor with m.s.’ to ‘a substantial portion of > m.s. patients will have clinically significant pain of this, that, or > the other type during the course of the disease.’  as the societies > go, so go the neuros! and the late 90s to this day has seen a real > boom in pain research. > this is a good website, deals specifically with central pain syndrome, > which not everyone with m.s. will develop, and which stems from causes > other than m.s. — but they have some very good info on neuropathic > pain in general as well — http://www.painonline.org/  if you’re > interested — or if you think your neurologist might be!! > all the best, > rose

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On Sat, 02 Aug 2003 18:04:36 GMT, in alt.support.mult-sclerosis,Nice But Dim <stunospam…@netcomuk.co.uk> wrote: >Ha this is a good one to get me angry. >In the UK somewhere in the Mills & Boon >medical books that Neurologists get told to read >is a paragraph that states. "MS is pain free, >once a nerve has been damaged by MS it is >pain free, a muscle damaged by MS is pain free"

OK, that is so wrong on so many levels. My wife has diabetic neuropathy.  Her peripheral nerves just start dying off, from the longest nerves and progressing to the shorter ones. Lots of pain in her hands and feet, especially. If pain were not a major symptom of neuropathy, then neuropathy wouldn’t be of any real consequence, aside from the numbness. >So QED MS is a pain free disease. >I have had no fewer than 3 consultant neurologists spout >this crud at me, my response last time was to say. >OK you are right the muscle damaged by MS is pain free >sadly its still attached to another muscle which is NOT damaged >and hurts like STINK, in fact that gnarly muscle is capable of >snapping and THAT HURTS. >So Mr smiley Neuro >MS Hurts >IT AIN’T PAIN FREE

While all that you say is true, it can also be all in our heads, since that’s where the lesions are.  It is possible to feel pain without any peripheral physical cause. Unnerving, huh? — "Who we are and who we become depends, in part, on whom we love." — "A General Theory Of Love"  Thanks, Mom ______________________________________________________________ Glen Appleby  gl…@armory.com <HTTP://www.armory.com/~glena/>

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Nice But Dim <stunospam…@netcomuk.co.uk> wrote in message <news:qjuniv877qh62hfh3o2ondh6ucmi22pub8@4ax.com>… > Ha this is a good one to get me angry. > In the UK somewhere in the Mills & Boon > medical books that Neurologists get told to read > is a paragraph that states. "MS is pain free, > once a nerve has been damaged by MS it is > pain free, a muscle damaged by MS is pain free" > So QED MS is a pain free disease.

that one makes me boil too, but we don’t hear it too often in the u.s. anymore. my 1st three neuros, including the guy who’s still my doc, all said ‘there is no pain with m.s., only stiffness.’ the first guy believed in steroids, bed rest, and keeping the poor invalids ’stress free,’ which meant lots of tranqs and muscle relaxers. the 2nd one believed people with m.s. were a bunch of babies, and got me hooked on valium, then left me to withdraw cold turkey by cancelling my refills when i dared to question her treatment by saying i wanted to get another opinion. neuro no. 3, who i’ve been seeing for over 10 years now, first said i must have ‘a bad back or something,’ but then had the grace to apologize to me AFTER the U.S. M.S. Society changed its position that ‘pain is not usually a factor with m.s.’ to ‘a substantial portion of m.s. patients will have clinically significant pain of this, that, or the other type during the course of the disease.’  as the societies go, so go the neuros! and the late 90s to this day has seen a real boom in pain research. this is a good website, deals specifically with central pain syndrome, which not everyone with m.s. will develop, and which stems from causes other than m.s. — but they have some very good info on neuropathic pain in general as well — http://www.painonline.org/  if you’re interested — or if you think your neurologist might be!! all the best, rose

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On Sat, 02 Aug 2003 18:04:36 GMT, Nice But Dim <stunospam…@netcomuk.co.uk> wrote in alt.support.mult-sclerosis: >In the UK somewhere in the Mills & Boon >medical books that Neurologists get told to read >is a paragraph that states. "MS is pain free, >once a nerve has been damaged by MS it is >pain free, a muscle damaged by MS is pain free" >So QED MS is a pain free disease. >I have had no fewer than 3 consultant neurologists spout >this crud at me, my response last time was to say.

I thought they no longer preached this myth. I have never heard one say it is pain free. Perhaps I am just lucky, if one said that to me I might just have to scratch his or her eyes out. Newbies, beware of Tom Hennessy (ironjustice). NO medical background, he just copies and pastes. — Joan

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A little over two years ago I was struck by car when crossing the street in the crosswalk using my wheelchair.  She drove into my legs.  Even though it did not feel bad at the time, I asked the paramedics to take a look.  When they were examining my legs they asked to various things hurt.  I responded that I could not feel them touching my legs most of the time. Within a few days my calves and ankles swelled up to twice their normal size.  An x-ray a couple days later showed a slight fracture in my tibia.  I ended up spending almost three months in the hospital because of infection from the cellulitis which spread through the fracture to the bone marrow.  I did not really experience any pain during this whole episode. I suspect everyone is different and their reactions to pain would depend specifically on where the source was and what symptoms they normally experience. I have very limited vibration sense in my lower legs and hands. — Larry rather than building character, adversity tends to reveal it written with voice recognition software "John Cawston" <rewar…@ihug.co.nz> wrote in message

news:3F2A3B3E.B4EF3D6E@ihug.co.nz… – Hide quoted text — Show quoted text -> A few of our MS members believe that MS disguises, or masks > the true degree of pain. Has anyone any views on this?

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I don’t know about "masking" pain – but I think we all get so used to the aches and pains of MS – as do our doctors that when something seems worse than usual – we all may tend to just say "awh it’s just the MS giving me a problem" when it could be something more serious. j jkl

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i think it does depending on whether or not you have sensory symptoms. For example, I had numbness in my feet  and couldn’t feel hot and cold. therefore I was able to walk across hot sand without it burning my feet while my friend was jumping up and down because it hurt. When I fell down the stairs and gave myself a hairline fracture in my ankle, i had no idea i had hurt it that bad. The only clue was that it swelled up like a bugger and turned a disgusting shade of blue/purple. I know i am always extra careful if im having an attack and have some numbness because i know i can’t feel all that well and oculd possibly hurt myself Jen "John Cawston" <rewar…@ihug.co.nz> wrote in message

news:3F2A3B3E.B4EF3D6E@ihug.co.nz… – Hide quoted text — Show quoted text -> A few of our MS members believe that MS disguises, or masks > the true degree of pain. Has anyone any views on this? > I, can personally vouch for this, as I have just spent over > half a month in hospital, recovering from a perforated, > abcessed appendix which had also stuck to other organs. > Really, I should have been in extreme pain, but all I could > feel was a slight dull pain when pressed, and a bit sitting > and rising from a chair. So I grudgingly took myself off to > the doctor, only to be sent to hospital for more tests, and > never got out of there for 18 days !! Felt like an > overstayer  The op took 3 times longer than normal, all > that unpicking beforehand I guess, then later massive pelvic > infection set in, with temps yo-yoing for days. After many > bags of antibiotics, and drainage tubes and bags, etc, I am > finally HOME. > My point is  - MS masked that pain big time, otherwise I > would have been rushing to the doc days ago. > Two good points- I lost a stone in weight, and now have a > free lady cleaner for 6wks, for 2hrs per week. I could get > used to this!!:) > For those of you who don’t know me, I have PPMS for 16 yrs > from NZ, am basically a lurker, but when I do post, it’s > major > Heather

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On Fri, 01 Aug 2003 22:04:46 +1200, in alt.support.mult-sclerosis,John Cawston <rewar…@ihug.co.nz> wrote: >A few of our MS members believe that MS disguises, or masks >the true degree of pain. Has anyone any views on this?

Since MS messes with nerves, both motor and sensory, it may well do just that.  It can also cause the sensation of pain where there is no cause. MS givith and MS taketh away. — "Who we are and who we become depends, in part, on whom we love." — "A General Theory Of Love"  Thanks, Mom ______________________________________________________________ Glen Appleby  gl…@armory.com <HTTP://www.armory.com/~glena/>

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Ha this is a good one to get me angry. In the UK somewhere in the Mills & Boon medical books that Neurologists get told to read is a paragraph that states. "MS is pain free, once a nerve has been damaged by MS it is pain free, a muscle damaged by MS is pain free" So QED MS is a pain free disease. I have had no fewer than 3 consultant neurologists spout this crud at me, my response last time was to say. OK you are right the muscle damaged by MS is pain free sadly its still attached to another muscle which is NOT damaged and hurts like STINK, in fact that gnarly muscle is capable of snapping and THAT HURTS. So Mr smiley Neuro MS Hurts IT AIN’T PAIN FREE You don’t have it so you dont know..RASPPP NBD On Sat, 02 Aug 2003 04:18:02 -0700, Glen Appleby <dirtde…@rcip.com> wrote: – Hide quoted text — Show quoted text ->On Fri, 01 Aug 2003 22:04:46 +1200, in >alt.support.mult-sclerosis,John Cawston <rewar…@ihug.co.nz> >wrote: >>A few of our MS members believe that MS disguises, or masks >>the true degree of pain. Has anyone any views on this? >Since MS messes with nerves, both motor and sensory, it may well >do just that.  It can also cause the sensation of pain where >there is no cause. >MS givith and MS taketh away.

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A few of our MS members believe that MS disguises, or masks the true degree of pain. Has anyone any views on this? I, can personally vouch for this, as I have just spent over half a month in hospital, recovering from a perforated, abcessed appendix which had also stuck to other organs. Really, I should have been in extreme pain, but all I could feel was a slight dull pain when pressed, and a bit sitting and rising from a chair. So I grudgingly took myself off to the doctor, only to be sent to hospital for more tests, and never got out of there for 18 days !! Felt like an overstayer  The op took 3 times longer than normal, all that unpicking beforehand I guess, then later massive pelvic infection set in, with temps yo-yoing for days. After many bags of antibiotics, and drainage tubes and bags, etc, I am finally HOME. My point is  - MS masked that pain big time, otherwise I would have been rushing to the doc days ago. Two good points- I lost a stone in weight, and now have a free lady cleaner for 6wks, for 2hrs per week. I could get used to this!!:) For those of you who don’t know me, I have PPMS for 16 yrs from NZ, am basically a lurker, but when I do post, it’s major Heather

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