Give me steriods or give me death.

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casinokid80
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Date Joined Mar 2007
Total Posts : 46
   Posted 6/26/2008 11:57 AM (GMT -7)   
I recently got diagnosed with MS.  They found out ive had it for over 6 years, due to the fact it was my second time with optic neauritis.  The first time i had it, stupid eye doctors told me i was fine, and that i needed stronger lenses for nearsightedness. I only wear glasses for driving at night, still to this day. They also suggested i smoked too much weed and drank too much.  (idiots)
 
Now this is my second attack, its been a month since i was on steriods, which cured 90 percent of the optic nearitis.  Since i stopped taking it.  My eye hasnt fully cured, my right arm is completly numb and useless, also i need rotator cuff needs surgery in the same arm.  Then i got a spinal tap last week, and have to lay in bed 22 hours a day, due to SEEEEVVVERRRREEEE headaches whenever im not laying down.  Doctors said it should last one day.  Its been 9 days.  Now just yesterday, my good arm started becoming numb, along with my feet.  Its terrible, i can barely type with my one good arm now. 
 
I told the doctors and they ignore me.  Why im i being refused steriods, if im still having a bad attack??  They are like yea, it has bad side efects blah blah blah.  Uhhh ill take side effects, rather then being in a wheelchair.  Also i have to wait another 6 weeks now just for treatment.  Its worsening everyday, also i cant go to the emergency room and get anything, without a refferal from the doctors who do nothing to help me.  This doesnt make any sense, as ive read steriods are the only thing to help with the attacks im having right now!!!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/26/2008 12:43 PM (GMT -7)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/26/2008 9:41 PM (GMT -7)   
Casinokid, I just went thru the LP headache hell you're talking about and it will pass before you know it... and all the other stuff will be aggravated too but it will ease up. It seems my LP triggered a flare with me also which has caused alot of numbness and pains that I didn't have before but it's slowly trying to subside, I hope but I know it will... everything is a cycle with this disease. Just season after season it seems.
 
Gretchen, that was a awesome explanation of the steroids issues... honestly, steroids are wonderful short term helpers... quick fixers but they are also robbers of our bodies of the very things we need the most like our muscles strength. That's why drs don't use them so freely... I've been very happy my neuro isn't steroid happy. I'll deal til I have to accept them. I really liked your explanation Gretchen! Thanks!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 6/28/2008 11:38 AM (GMT -7)   

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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/28/2008 6:14 PM (GMT -7)   
Willow, I did it, I really did! :) Had to wait for an order from the drs office (two more days after I requested it)... and then...  Blasted doctor (anesthesiologist) refused based on the fact that I "didn't look in pain enough"  (!!!!!) and had that blasted headcold I picked up at the hospital the day of the LP... told my neuro on my emergency visit last week that next LP we just do that blood patch on the spot... he laughed and said ok. 
 
Sooooo next time absolutely I will not be so tough... I too really really hate that headache... fortunately one of my bosses (I'm an admin ass't to two pastors at church) had this same problem, and man he couldn't feel worst for me, wouldn't let me work, sent me home, etc... but not again... nono next one, blood patch asap. I know I'm a leaker now. 
 
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 6/29/2008 2:28 AM (GMT -7)   
thanks for the replies! 
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
 http://www.healingwell.com/community/default.aspx?f=46&m=106997

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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/29/2008 5:29 AM (GMT -7)   

Casinokid, I am really glad you're feeling better and I'm really sorry you've been dx'd with ms. It's a wicked dx and a slippery slope to find your balance on. I have found myself very introspective and finding my place in my world alot to figure out how I fit where I thought I was going and where I really am now.

Our moderators have recommended a couple of wonderful books to help understand this disease and I'd suggest them for you too, they've helped me alot... MS and your feelings, Allison Shadday ISBN 10089793489X and Managing the Symptoms of Multiple Sclerosis, Randall T. Schapiro, MD ISBN1932603360.  Both of these have really been wonderful book for me... along with several others I've enjoyed that I've discovered in my pursuits.

As for progression therapy, I am on that cusp also now of "choosing" my med or not... my dr is considering it. At first he was saying, no lesions showing (note "not showing" doesn't mean they aren't there, they're just not coming thru on the MRI's) and no OBands in the LP... but I'm in a nasty flare right now that is entirely right sided and very painful.

Progression therapy doesn't involve steroids.  I dont' understand a lot about it but what I do understand is some are interferons and some aren't. The interferons are good but tough on the liver sometimes and have heavy sideeffects... some handle that well and some don't... since my case seems to be what the neuro terms currently "benign" (it's an oxymoron according to my neuro cos there's nothing "benign" about MS) because it's not in a very aggressive stage, then Copaxone may be our best route... we'll decide this in August.
 
From your post, you revealed alot of humility since this disease hit you, I commend you for your recognizing the changes in yourself. Try to remember though that like your heroes, the steroids create a false personna, build up false strengths and false feelings... personally, as Willow pointed out, I'm kinda tough about some stuff and I'd rather know what my body's going through with the pain while it's going thru than to create an illusion that will cause me not to in touch with it all. Steroids are emergency use only, short term rescuers... any steroids long term is just a different kind of thief in your body which makes it no better than the disease itself.
 
You're young, hang onto all you got as long as you can and work with what you have the best you can while you can.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/29/2008 9:10 AM (GMT -7)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 6/29/2008 6:02 PM (GMT -7)   
Hey guys- I think you have all given some great information here. I can't add much to it, other than seconding a few things. I was thinking about Fatigue when I read your post Casinokid- fatigue is reported most commonly as the most bothersome MS symptom I believe. Something like 80% of MS folks deal with it and it can be bad. Like you've been awake for 48 hours after a full night's sleep. Or low-grade but constant. And it can certainly be depressing to be tired all the time. Conversely, depression can cause more fatigue. But trying some meds for fatigue might be possible- ask your doctor. I didn't have luck and stick with caffeine but others here have had good results.
(D- my apologies- I forgot that you did finally go in for the blood patch and they refused you! That is so terrible. I admire your toughness ;)
Just my experience- betaseron for 4 years ( I liked the efficacy studies and wanted to hit MS with the toughest I could), 6 months of Avonex (injected by a nurse) 6 months of nothing (needed to get red blood cells up, was anemic for awhile) and now back on avonex and doing my own injections for a month. Once you choose your med, Kid, this is a great place to get tips. Willow

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 6/29/2008 7:37 PM (GMT -7)   
Im not really fatigued anymore, except if its really hot and humid. All my energy is back now that the LP headaches went away. Truthfully those steriods gave me a new outlook on life, like it killed whatever was in brain that causes depression. Ive became a much better person, and feel soo much better mentally. Kinda weird to say but being diagiosed, was a good thing in a sick twisted way,. I really used to be such a ###@head. I don't hate the world anymore. So like i said im more worried up keeping up my mental well being, then the symptons from MS. Its been almost 6 weeks now since the steriods and i still feel mentally great. I pray i never turn back into the person i was.

Sorry gretchen im not mad at ya. I got my point across. Rules are rules, i think i can still edit out my own curses right lol.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/29/2008 8:40 PM (GMT -7)   

Casinokid,

It is so great to here you thinking so positively!  That is so great.  I am very glad.  Just remember if things change, ask for help so you can get back to that great place as soon as possible.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/1/2008 1:11 AM (GMT -7)   
dawesome yea my nuero said he thinks im benign, now im not so sure. But i was extremely depressed and fatigued since 2001. I had optic neauritis for 4 days when 9/11 happened.  So it was quite awhile ago, i got tested for glaucoma, diabetes and whatever else.  Since its a brain problem, optomologists told me i needed better lenses lol.  I forgot about it.  Then the ON came back, so i told the optomologist this was my second time. So i got an MRi 2 months ago, i too have the lesions (doesnt everyone with ms), but im worried about my right arm. i used to be in alot of pain in my arm due to the bat.  Now i have no pain but its complety numb and lost all hand eye coordination in it.  I have to drive with one arm now. Try doing that with a beer and talking on your cellphone, just kidding lol.
 
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.  :+)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/1/2008 10:12 AM (GMT -7)   

Ok C-kid!!!

Don't over-do it with all your new found energy!!  It is very easy to do.  Please do get some rest and take good care of your body.  It really does help to have some solid healthy living patterns in place with this disease.

Talk to your doctor about that arm!  You may need some physical training there.  Be careful while it is numb.  It will be much easier to injure.  Be careful of heat (hot coffee and the like)


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/3/2008 5:38 PM (GMT -7)   
Hey Casinokid: I am glad you are feeling better and able to enjoy your life. I read in another post you were talking about smoking. Does that help you symptoms? I read it does and curious?
 
 
 
 

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


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/3/2008 5:58 PM (GMT -7)   
WHOOPS I just broke a rule here. I just checked.I am sorry and it will not happen again.

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/4/2008 1:48 AM (GMT -7)   
i think it has more due to the fact, that it relaxes you and lowers your stress levels.  I heard from the doctors that its very important to try not to be stressed out, as it can make your symptoms worse.

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/4/2008 5:50 AM (GMT -7)   
Well I am glad that you are feeling better right now. Just thinking last year I was in Amsterdam and had a really relaxing time. Place is amazing.

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/4/2008 3:17 PM (GMT -7)   
lol sand so i heard.

20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 7/6/2008 11:10 AM (GMT -7)   
I love that post....Give me steroids or give me death....Everytime I look down over the list of posts I just laugh and smile....Thanks for making me grin yeah
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