Re: Different Opinion about Solu-Medrol (OT)

[Guest guest]

Hi there - please don't slip too far into your cave, your opinion

was well expressed, and at least for me, much appreciated. You are

completely correct, this is a very personal disease, and each of us

must find our own paths.

Having undergone SoluMedrol treatment to " save " my eyesight, I too

agree that for some of us, it has it's place. But I also agree with

those who have grave concerns about it's effects, and those who

choose to reserve it as a treatment of last resort. Now that I am on

LDN and am doing well (lucky - YES!) I hope I never have to endure

it again. But I will if and when I need to.

You are without doubt very intellegent, so I am sure you are aware

of the long term negative side effects of steroid use, and have

weighed the consequences of getting infusions every 3 months. I am

just slightly younger than you, (although in significantly better

health - less severe MS) and to be honest, those side effects on a

person of our age would concern me greatly. After all, most of us

will have a " normal " life span, and while significant bone loss

maybe not a huge issue in our 50's it very well may become

significant in our 60's and 70's. And I think we have enought

problems without our meds. adding to them. However, the disabling

effects of MS are equally or more scary, so, we all have to do what

we think is best. I have the greatest respect for you, and am sure

you are doing what is best to treat your disease.

God Bless, and best of luck with your treatment. You did not say if

you are considering LDN, (and I am not sure from your post if you

are still on betaseron or not) but if not, I hope you are

considering LDN. It might not be the " thing " for you, but many of us

have had good success, and feel it is worth trying.

Cinders

[Guest guest]

HI CINDERS-

YOU WROTE AN EXCELLENT E-MAIL AS WELL, AND SAID WHAT I WAS

THINKING. THANK YOU.

IV STEROIDS DO HAVE SIDE-EFFECTS - BUT CAN BE EXTREMELY

HELPFUL WITH FLARE-UPS, ESPECIALLY WITH OPTIC NEURITIS. I

HAVE HAD THE TREATMENTS SEVERAL TIMES OVER 11 YEARS. I'M 49

YEARS OLD AND HAVE ALREADY HAD CATARACT SURGERY - BUT I WAS

WELL AWARE THAT CATARACTS WERE A LIKELY OUTCOME OF STEROID

INFUSIONS. I WATCH BONE DENSITY AND ANY SIGNS OF DIABETES,

AND KNOW THAT ANXIETY AND INSOMNIA SOMETIMES TAKES HOLD.

ONLY FROM EXPERIENCE DO I NOW KNOW HOW TO DEAL WITH THE

NEGATIVES. I KNOW MANY PEOPLE GET VERY AGGITATED WITH

STEROIDS. THANKFULLY, FOR ME, THE POSITIVES OUTWEIGH THE

NEGATIVES.

THERE ARE SEVERAL GOOD BOOKS OUT ON THE USE OF PREDNISONE -

I BOUGHT ONE FROM BARNES AND NOBLE - SORRY I LOANED IT TO

SOMEONE AND DON'T HAVE THE TITLE. IT WAS A PAPERBACK. IT

PROVIDES HELPFUL SUGGESTIONS RELATED TO COUNTERACTING THE

SIDE-EFFECTS - LIKE CHANGES IN DIET (LOW SALT, LOW FAT), ETC.

IT'S SCAREY, BUT WHEN I HEAR SOMEONE HESITANT TO DO IV'S, I

ALWAYS ENCOURAGE THEM TO TRY. AS YOU SAY, EVERYONE IS

DIFFERENT.

BESTAUNT

[Guest guest]

Hi Cinders, , and all

I feel as though I should start this like

"I May be wrong but"

You all have heard from me before and I won't knock any drug specifically as we are all so different. I just had to throw my two bits in on this subject as maybe I have a small point here,

So back in 1981 I had three separate episodes of M.S. i.e.double vision tingling fingertips and dragging leg plus that all invasive tiredness that we know so well.

This was in 1981and we hadn't come as far as now.there wasn't even a M.R.I. on the horizon. So any CRAB drugs that I could use were still either under trial or not allowed in Canada.

What could I do? Well I went to a naturopath kinesiologist person. I won't go into details but needless to say within two months I was as good as new, now of course I gave her all the credit or at least her treatment program,diet, internal cleansing, and supplements.

This was all fine and dandy for fourteen years and then voila' it was back i.e. double vision tingling fingers dragging leg tiredness falling down etc.

So of course I tried all of what worked before .....it didn't help

Now we have new methods of controlling this right?

The Dr.s and the Neurologist said not in my case as I went so long between episodes!

What the H$## were they taking about? Did I screw myself out of a possible treatment cause of the naturopathic cure? Or was this just the natural course of my disease? It would hit hard and then hide? There is no one that can answer that.

My symptoms were quite quickly getting worse and I quit work and found LDN. Since then we have definitely slowed the inevitable downhill slide and even reversed its course somewhat.

Now what I am getting at is that maybe for me one or more of the Crabs would have done the same to my "onset" symptoms as the naturopath, and then I would have given it all the praise, but then again maybe,just maybe I would have resolved this problem without any intervention at all, and then I would have given God the Praise.

Really there are no sure things So no matter what we do about improving our state,

it has to be our decision, we have to live with the consequences of our actions, just as I will have to when I post this letter!

Face it for every supporter of any one treatment there are an equal number of detractors,is that not so?

Those of us with M.S.on LDN are lucky that we have one more option in our arsenal to combat this Chronic disease.

I use a cane all the time in doors, a power wheel chair outside in my yard, and a scooter when I am on the town. Compare these to drugs, they all have there place and I wouldn't have anyone tell me that one can be discarded for another. I will use each as needed but I can't use any two together.

Reg.

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

From: low dose naltrexone

Date: 06/08/04 09:22:11

low dose naltrexone

Subject: [low dose naltrexone] Re: Different Opinion about Solu-Medrol (OT)

Hi there - please don't slip too far into your cave, your opinion was well expressed, and at least for me, much appreciated. You are completely correct, this is a very personal disease, and each of us must find our own paths. Having undergone SoluMedrol treatment to "save" my eyesight, I too agree that for some of us, it has it's place. But I also agree with those who have grave concerns about it's effects, and those who choose to reserve it as a treatment of last resort. Now that I am on LDN and am doing well (lucky - YES!) I hope I never have to endure it again. But I will if and when I need to. You are without doubt very intellegent, so I am sure you are aware of the long term negative side effects of steroid use, and have weighed the consequences of getting infusions every 3 months. I am just slightly younger than you, (although in significantly better health - less severe MS) and to be honest, those side effects on a person of our age would concern me greatly. After all, most of us will have a "normal" life span, and while significant bone loss maybe not a huge issue in our 50's it very well may become significant in our 60's and 70's. And I think we have enought problems without our meds. adding to them. However, the disabling effects of MS are equally or more scary, so, we all have to do what we think is best. I have the greatest respect for you, and am sure you are doing what is best to treat your disease.God Bless, and best of luck with your treatment. You did not say if you are considering LDN, (and I am not sure from your post if you are still on betaseron or not) but if not, I hope you are considering LDN. It might not be the "thing" for you, but many of us have had good success, and feel it is worth trying.Cinders

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