Give me steriods or give me death.

Hey Casinokid,

I am very sorry to hear of your recent diagnosis and horrible suffering.  I think the doctors may have forgotten to tell you something though.  The steroids only treats symptons.  The steroids tend to make the flare shorter.  The steroids will NOT decrease any lasting damage you are left with after the flare.  I know you are probably miserable but try not to worry about being permanently disabled due the the fact that the doctor is not ordering up more steroids.  The steroids do not prevent disability at all.

Since you were on steroids only a month ago, most doctors won't put you on them again for a little while.  The steroids do real damage to your body ( as well as decrease inflammation which shortens the flare ).  Most docs want to give your body some time to recover from the steroids you have recently received. 

I can hear your frustration and I am so sorry you are suffering.  But the steroids only make you feel better, it does not stop damage.  You need to talk to your doctor about a progression therapy if you haven't started those already.  

I hope you feel better very soon.  Please keep us posted.

Hey Casinokid,

Sorry you are suffering so much and often doctors could help more by just listening and empathizing a bit I think.  Unfortunately the others are right about the steroids- they don't help prevent disability and they can cause lots of other troubles later.  I have an aunt in her early fifties who is having serious heart troubles (just got a pacemaker) due to years of steroids for lupus.  Other troubles with major organs and bone loss also.  I know if you're young you may think you'd rather have the steroids now, but again, remember they are just helping with symptoms not long term disability.  There are other meds for symptoms of pain, neuropathy and spasticity and it sounds like a conversation with the doctor about those would be good.  And absolutely a progression therapy.  I have had good success with interferons.  Some side effects but I've worked through them.

Oh- and if you still have a headache, go and demand a blood patch!  (is that too strong of advice?)  I tried to tell D ;) but she's a tough one and waited it out.  I guess they do heal, but I have no such tolerance and got a blood patch (piece of cake procedure) two days later and headache was gone in ten minutes.  Good luck- willow

Im feeling so much better finally.  Went out to manhatten and left the house for the first time in 2 weeks.  That LP headaches was hell. my god ouch.  Still have a slight headache, but now hydrocodones actually help, nothing helped for 2 weeks.

Im just worried, doctors said it was great news that ive had MS since i was 21, and i never had major symptons, till a month ago. im 28 now.  Just is weird, i know most of you are women, but i was always a tough guy.  Im an male italian from ny, and used to have a wicked temper.  I used to (be a jerk to my girlfriends), and was always a mean miserable guy, since the first time i had the optic neauritis.  Seriously i used to be an evil mean guy.  I have a barry bonds and roger clemens jersey lol.  Both the jerseys i bought before they were known steriod users.  Kinda funny, that my heroes from when i was a young kid are such losers.  I dont care, i love bonds, hes arrogant like how i used to be.

Even though i was always concieted and arrogant, i had SEVERE depression since my first bout with optic neauritis.  My best friend since i was 7 died, and my fiance/high school prom date/ went to college together left me for good.  I snapped, quit my job, slept 12 hours a day, drank at the clubs everynight.  I got so depressed, id want to sleep more, just in case i had a good dream, cause reality sucked.  Then after awhile, even when i had dreams, they were extremely depressining, I didn't want to go on living.

Now since i got the steriods, ive never been so happy.  The steriods completely took away my depression, besides that spinal tap hell.  But like i feel great again, im very happy with no reason to be.  I swear i look alot better since the steriods, i was all pale, and had bags under my eyes. I look again 18. I still feel the steriods i think, i have all sorts of energy again, like ive never had since i was 15.  Serously i think steriods are a cure for depression too.  Ill never take any depression meds again, it made it alot worse  So im actually doing real good, and feeling good.  My left hand is less numb, and my feet arent numb at all anymore.  Which is good news. My right arm is still horrible,  but i do need major shoulder surgery, because i got beat with a baseball bat, and yea it was metal lol.  Im thinking my whole arm was already messed up, the ms makes it worse.

Now i take b complex for vitamins, and finally take care of myself.  I drink like 4 beers every 2 weeks, i still smoke a lil  lol. Other then that, im taking great care of myself.

Im curious about a pill called lyrica.  Ive took it before for nerve problems realated to getting smashed by a bat.  It helped alot, the doctors wont give me that either.  They suck, as they messed up some things already.

I still havent had any treatment yet, they make me wait 2 and a half months after diagnosis??  Still have to wait 6 weeks.  Can you explain what exactly progression therapy is.  No idea what they are doing for me.  I have to pick out my own treatment options.  Have no clue what to choose.  I wanted the one with steriods lol, but as doctors and u ladies explained, its not long term.

** Hey Casino kid - I appreciate all that you have said here.  I had to edit some content due to rule violation.  I hated to do that but this is considered a family forum with some members as young as 13.  Please forgive me.  When you get a chance, please read our rules so that I won't have to edit what you are saying here.  Specifically, rule 1 is the one that caused me to have to edit.

Here is a link

 https://www.healingwell.com/community/default.aspx?f=46&m=106997

Post Edited By Moderator (Gretchen1) : 6/29/2008 9:42:33 AM (GMT-6)

Hi Casinokid,

You are asking some great questions.  Let me see what I can say to help you out here.  As you know, MS is incurable.  It gets worse for most people over time.  There are four major drugs that people use to try to slow down the progression of the disease.

There are Avonex, Betaseron, Rebif and Copaxone.  All of these are injectables.  Each has a slightly different injection schedule.  Avonex must be injected into muscle (so a longer needle) and it is once a week.  Betaseron is every other day and Rebif is three times a week (most do a Monday, Wedneday, Friday sched), Copaxone is everyday.

Avonex, Betaseron and Rebif are called interferons which means they come with some flu like side effects for 5 to 8 hours after each injection.  Most manage this by taking advil before injecting and injecting at night so you sleep through the worst of it.

Copaxone must be injected everyday but no real side effects other than local injection site pain.

Not all meds work for all people.  Some have to try different ones to see which ones work for them.  You won't necessarily feel differently on them, it is not meant to treat you symptoms.  You and your doctor will know if your med is working by tracking your clinical progression ( are your symptoms staying the same and holding steady?) and through MRIs each year to track your lesions.

There are some other meds that some may have to work with if the ones listed here don't work.

Some choose to take no meds and to manage the disease progression through healthy lifestyle and supplements. 

There are other meds that can manage symptoms a bit.  That sounds like something you may want to talk to your doctor about.  If the steroids made you feel better, you may be suffering from fatigue.  You have clearly suffered from depression.  These are both real issues that need to be addressed with this disease.  If you have a doctor that won't help you out with symptom management, then by all means, find another that is willing to increase your quailty of life.  Health care in this country is consumer driven and you are the consumer.  Pay for the best care you can get.

Ok this was a terribly long post.  I hope you are still awake!  Haha.  I do hope this helps you some.  I know this is overwhelming so don't feel bad if you need to keep asking more questions.  That is why we are here.

dawesome im sorry your in alot of pain, you were in a car accident correct?  Also with the Mris, ive taken 3 recently, 2 for the brain, 1 for my shoulder.  Now the thing is my first mri, was taken by a weaker machine, they said its 1.5  , i guess thats the magnifaction? I didnt research it.  My 2 others mris were taken and ones for now on is 3.0 MRI which is obviously twice as strong and picks up more stuff.  I was told that 90 percent of mri machines are 1.5 .  Just something to check out dawesome.

I cant sleep after sleeping 20 hours a day for almost 2 weeks.  Im making up for lost time.  :+)

Post Edited By Moderator (Gretchen1) : 7/3/2008 7:29:40 PM (GMT-6)