Different Opinion about Solu-Medrol

[Guest guest]

I'm just beginning an investigation into LDN, and did not plan to

post until I had, at least, read all the previous posts (which means

you most likely would have NEVER heard from me!). However, bear with

me, because the tenor of some of the recent posts with dire warnings

about Solu-Medrol distressed me terribly. I will not be able to

reduce my stress level until I get this out!

I would beg leave of everyone (I don't remember the names) to let me

kindly suggest that when you attempt to give advice about an

available treatment for MS, you consider limiting your commentary to

the context of your personal experience. You could reflect on the

fact that MS comes in a variety of flavors, has a thousand different

faces, can result in probably something like a million different

possible combinations of disabilities (some irritating, some

devastating), that some of the less caustic treatments work for some,

but sadly, not for all. I would also consider that 97% of the

individuals within earshot of my near-hysterical sounding warnings

and admonitions, have a personal chemistry completely different from

mine, and are, most likely, at a distinctly different (perhaps

critical) " stage " of disease progression than the one from which I am

speaking. I may have no use for a particular therapy, but that

doesn't mean it can't be helpful to someone else.

I have had MS for 30 years. The first 15 were easy. In 1986, I

turned a corner and found myself heading into the nightmare of severe

disability. I had my first Solu-Medrol infusion in 1996, and after it

was over, my family thought they'd never hear the end of my griping

about the SEs and my eternal caterwauling about how I'd be

an " invalid " before I ever did that to myself again (I didn't sleep

for 8 days and was certifiably " crazy " )! But, back on my feet again

and facing yet another " crisis " -- with no other hope for relief in

sight -- suddenly the SEs seemed a small price to pay for a bid to

maybe walk again, one more time. (MS will do nothing if not --

eventually -- make you humble.)

Nothing BUT Solu-Medrol - so far -- has had any ability to slow the

progression of my MS. (I was off Betaseron for 2 years, and my first

brain MRI following that hiatus, showed no active lesions.) On

Betaseron, in 2003 alone, I had three infusions, with sets of MRIs

done before and after. In all instances, the active disease

appearing on the " before " MRI had been rendered " inactive " on

the " after " scan, and continued to fade far away throughout the

year. Going forward, I will be on a regular 3-mo. schedule

of " pulse " Solu-Medrol infusions -- probably for the rest of my

life. I have little real hope anything can put a stop to this

train. Solu-Medrol does nothing to prevent future exacerbations, but

it puts a quick end to new activity. If I had I been successful

eliminating that one " weapon " out of my vocabulary, I have no doubt I

would be an invalid today.

Fortunately, I personally bounce back from the " ordeal " of the

infusions quickly, and immeasurably stronger. Others might have that

same experience. The laundry-list of dire consequences and horrifying

long-term effects offered here, are all manageable (or avoidable)

with a little knowledge, inititive and common sense. When its all

said and done, virtually all chemical treatment for MS involve vast

unknown, long-term health consequences. In the very darkest hours I

share with this relentless assault on my existence, the terrifying

sense of desperation that comes with legs that won't respond to any

command, turns the question of enduring a few unpleasant SEs into a

decidedly trivial matter.

My personal experience with this treatment is that the less you

really need it, the more " unpleasant " the SE are. If your disease

has progressed sufficiently, and continues to attack relentlessly, if

your system is in " distress " and really NEEDs this therapy for

repair, the SEs are hardly noticeable.

I have the utmost respect for you all -- anyone dealing with the

disturbing, debilitating physical, spiritual and emotional effects of

this disorder, large or small, at any of is relentless stages. Some

of you seem in a lot younger and in better shape than I am (I'm 53).

I surely don't begrudge you your good (better?) fortunes, but I can't

help but speak up for those who might be a little further along the

line than you and not doing quite as well. I would hate to see

someone forego a treatment that could make a difference, do nothing,

and slip into a deeper stage of disability, out of fear.

It's a blessing to have such a confounding malady and discover

hundreds of other people willing to wander around in the dark with

you! But, at the end of the day, we're left alone with our own past

and our own future with MS -- and for each of us, it's a very, very

personal journey.

I'm slipping back into my cave now! Thank you all for your

indulgence of my " fit. "

[Guest guest]

I need to respond to this, at least briefly, before I head out the door. As

usual, I'm running late...

I don't think any of us are trying to stop anyone from using the IV

Solumedrol treatments. My concern is that they are not really the benign

treatment our doctors tend to want us to believe, and people are not warned

of the side effects prior to treatment. Like all of the treatments

available to us, Solumedrol should be an informed choice and often the

patient is NOT able to do research at the time of need. In my case I

couldn't even read my PC monitor to DO any research, and I was assured that

the IV's would be helpful and not cause problems. I could very easily have

chosen to end my life while on the three day treatment and during the months

following. This medication can be devastating psychologically and

physically and the fact that many can take repeated courses without

experiencing such problems does not make it appropriate for all of us.

Please take the time to research so that you will be able to make an

informed choice prior to the time of need...

----- Original Message -----

From: " mozartsymphny " <mozartsymphny@...>

<low dose naltrexone >

Sent: Tuesday, June 08, 2004 5:56 AM

Subject: [low dose naltrexone] Different Opinion about Solu-Medrol

> I'm just beginning an investigation into LDN, and did not plan to

> post until I had, at least, read all the previous posts (which means

> you most likely would have NEVER heard from me!). However, bear with

> me, because the tenor of some of the recent posts with dire warnings

> about Solu-Medrol distressed me terribly. I will not be able to

> reduce my stress level until I get this out!

>

> I would beg leave of everyone (I don't remember the names) to let me

> kindly suggest that when you attempt to give advice about an

> available treatment for MS, you consider limiting your commentary to

> the context of your personal experience. You could reflect on the

> fact that MS comes in a variety of flavors, has a thousand different

> faces, can result in probably something like a million different

> possible combinations of disabilities (some irritating, some

> devastating), that some of the less caustic treatments work for some,

> but sadly, not for all. I would also consider that 97% of the

> individuals within earshot of my near-hysterical sounding warnings

> and admonitions, have a personal chemistry completely different from

> mine, and are, most likely, at a distinctly different (perhaps

> critical) " stage " of disease progression than the one from which I am

> speaking. I may have no use for a particular therapy, but that

> doesn't mean it can't be helpful to someone else.

>

> I have had MS for 30 years. The first 15 were easy. In 1986, I

> turned a corner and found myself heading into the nightmare of severe

> disability. I had my first Solu-Medrol infusion in 1996, and after it

> was over, my family thought they'd never hear the end of my griping

> about the SEs and my eternal caterwauling about how I'd be

> an " invalid " before I ever did that to myself again (I didn't sleep

> for 8 days and was certifiably " crazy " )! But, back on my feet again

> and facing yet another " crisis " -- with no other hope for relief in

> sight -- suddenly the SEs seemed a small price to pay for a bid to

> maybe walk again, one more time. (MS will do nothing if not --

> eventually -- make you humble.)

>

> Nothing BUT Solu-Medrol - so far -- has had any ability to slow the

> progression of my MS. (I was off Betaseron for 2 years, and my first

> brain MRI following that hiatus, showed no active lesions.) On

> Betaseron, in 2003 alone, I had three infusions, with sets of MRIs

> done before and after. In all instances, the active disease

> appearing on the " before " MRI had been rendered " inactive " on

> the " after " scan, and continued to fade far away throughout the

> year. Going forward, I will be on a regular 3-mo. schedule

> of " pulse " Solu-Medrol infusions -- probably for the rest of my

> life. I have little real hope anything can put a stop to this

> train. Solu-Medrol does nothing to prevent future exacerbations, but

> it puts a quick end to new activity. If I had I been successful

> eliminating that one " weapon " out of my vocabulary, I have no doubt I

> would be an invalid today.

>

> Fortunately, I personally bounce back from the " ordeal " of the

> infusions quickly, and immeasurably stronger. Others might have that

> same experience. The laundry-list of dire consequences and horrifying

> long-term effects offered here, are all manageable (or avoidable)

> with a little knowledge, inititive and common sense. When its all

> said and done, virtually all chemical treatment for MS involve vast

> unknown, long-term health consequences. In the very darkest hours I

> share with this relentless assault on my existence, the terrifying

> sense of desperation that comes with legs that won't respond to any

> command, turns the question of enduring a few unpleasant SEs into a

> decidedly trivial matter.

>

> My personal experience with this treatment is that the less you

> really need it, the more " unpleasant " the SE are. If your disease

> has progressed sufficiently, and continues to attack relentlessly, if

> your system is in " distress " and really NEEDs this therapy for

> repair, the SEs are hardly noticeable.

>

> I have the utmost respect for you all -- anyone dealing with the

> disturbing, debilitating physical, spiritual and emotional effects of

> this disorder, large or small, at any of is relentless stages. Some

> of you seem in a lot younger and in better shape than I am (I'm 53).

> I surely don't begrudge you your good (better?) fortunes, but I can't

> help but speak up for those who might be a little further along the

> line than you and not doing quite as well. I would hate to see

> someone forego a treatment that could make a difference, do nothing,

> and slip into a deeper stage of disability, out of fear.

>

> It's a blessing to have such a confounding malady and discover

> hundreds of other people willing to wander around in the dark with

> you! But, at the end of the day, we're left alone with our own past

> and our own future with MS -- and for each of us, it's a very, very

> personal journey.

>

> I'm slipping back into my cave now! Thank you all for your

> indulgence of my " fit. "

>

>

>

>

>

>

>

[Guest guest]

mozartsymphny

I to have had MS for over 30 years but I"ve only taken Solu-Medrol

for 2 years. Please email me. I've got some questions you might

help with.

Thank Youu,

* Tom Tucker

chtucker@...

----- Original message -----

From: mozartsymphny

low dose naltrexone

Sent: Tuesday, June 08, 2004 8:56 AM

Subject: [low dose naltrexone] Different Opinion about Solu-Medrol

I'm just beginning an investigation into LDN, and did not plan to post until I had, at least, read all the previous posts (which means you most likely would have NEVER heard from me!). However, bear with me, because the tenor of some of the recent posts with dire warnings about Solu-Medrol distressed me terribly. I will not be able to reduce my stress level until I get this out!I would beg leave of everyone (I don't remember the names) to let me kindly suggest that when you attempt to give advice about an available treatment for MS, you consider limiting your commentary to the context of your personal experience. You could reflect on the fact that MS comes in a variety of flavors, has a thousand different faces, can result in probably something like a million different possible combinations of disabilities (some irritating, some devastating), that some of the less caustic treatments work for some, but sadly, not for all. I would also consider that 97% of the individuals within earshot of my near-hysterical sounding warnings and admonitions, have a personal chemistry completely different from mine, and are, most likely, at a distinctly different (perhaps critical) "stage" of disease progression than the one from which I am speaking. I may have no use for a particular therapy, but that doesn't mean it can't be helpful to someone else.I have had MS for 30 years. The first 15 were easy. In 1986, I turned a corner and found myself heading into the nightmare of severe disability. I had my first Solu-Medrol infusion in 1996, and after it was over, my family thought they'd never hear the end of my griping about the SEs and my eternal caterwauling about how I'd be an "invalid" before I ever did that to myself again (I didn't sleep for 8 days and was certifiably "crazy")! But, back on my feet again and facing yet another "crisis" -- with no other hope for relief in sight -- suddenly the SEs seemed a small price to pay for a bid to maybe walk again, one more time. (MS will do nothing if not -- eventually -- make you humble.)Nothing BUT Solu-Medrol - so far -- has had any ability to slow the progression of my MS. (I was off Betaseron for 2 years, and my first brain MRI following that hiatus, showed no active lesions.) On Betaseron, in 2003 alone, I had three infusions, with sets of MRIs done before and after. In all instances, the active disease appearing on the "before" MRI had been rendered "inactive" on the "after" scan, and continued to fade far away throughout the year. Going forward, I will be on a regular 3-mo. schedule of "pulse" Solu-Medrol infusions -- probably for the rest of my life. I have little real hope anything can put a stop to this train. Solu-Medrol does nothing to prevent future exacerbations, but it puts a quick end to new activity. If I had I been successful eliminating that one "weapon" out of my vocabulary, I have no doubt I would be an invalid today.Fortunately, I personally bounce back from the "ordeal" of the infusions quickly, and immeasurably stronger. Others might have that same experience. The laundry-list of dire consequences and horrifying long-term effects offered here, are all manageable (or avoidable) with a little knowledge, inititive and common sense. When its all said and done, virtually all chemical treatment for MS involve vast unknown, long-term health consequences. In the very darkest hours I share with this relentless assault on my existence, the terrifying sense of desperation that comes with legs that won't respond to any command, turns the question of enduring a few unpleasant SEs into a decidedly trivial matter.My personal experience with this treatment is that the less you really need it, the more "unpleasant" the SE are. If your disease has progressed sufficiently, and continues to attack relentlessly, if your system is in "distress" and really NEEDs this therapy for repair, the SEs are hardly noticeable.I have the utmost respect for you all -- anyone dealing with the disturbing, debilitating physical, spiritual and emotional effects of this disorder, large or small, at any of is relentless stages. Some of you seem in a lot younger and in better shape than I am (I'm 53). I surely don't begrudge you your good (better?) fortunes, but I can't help but speak up for those who might be a little further along the line than you and not doing quite as well. I would hate to see someone forego a treatment that could make a difference, do nothing, and slip into a deeper stage of disability, out of fear.It's a blessing to have such a confounding malady and discover hundreds of other people willing to wander around in the dark with you! But, at the end of the day, we're left alone with our own past and our own future with MS -- and for each of us, it's a very, very personal journey. I'm slipping back into my cave now! Thank you all for your indulgence of my "fit."