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New Here...

Hello, my name is Erin and I am new to this forum.

I was diagnosed with MS in November of 1997 following an attack of optic neuritis.  I may have had a few mild symptoms like hands or feet falling asleep at night prior to that, but nothing that ever caused me to seek medical counsel.  At that time, I was given a 3-day course of IV solumedrol followed by a 5-day course of oral prednisone.

For the last 10 years, I have had a relatively slow or silent progression of my MS - maybe one or two relapses a year of things like numbness of my hands/arms - feet/legs on one side, tightness on one side of my face which would pull my mouth to one side, one incident where I had a tremor in one arm (not sure if that was related, but it seemed like a neurological thing so I figured it must be related somehow).  The only time that I sought medical care for any of the relapses was this last April when I had numbness in my hands/feet and a band of tightness around one side of my middle.  My neurologist was very adamant that I have an MRI (I've had maybe 4 over 10 years and this last one had contrast), that I do the IV solumedrol (praise God they stopped doing the oral prednisone taper - that was nasty!), and that I begin taking Copaxone (I had routinely refused this type of treatment, specifically Avonex, for many years because I wasn't very bad and we wanted to have children - although that still hasn't happened after 10 years).  I did all this, but the relapse at that time did not seem to go away any faster because of the Solumedrol.  It still took about 3-4 weeks to totally clear up and somewhat longer than that till I felt all the effects from the steroids go away and my energy level return to mostly normal.

Right now, I have had the same numbness and tight band feeling since Sunday.  My neurologist is away on vacation, and the one on call says I can do the Solumedrol or not do the Solumedrol.  No difference except how long until the symptoms go away.  Years ago when I had optic neuritis, they told me that the Solumedrol was necessary to make the symptoms go away faster AND to prevent further damage.  If that is true, isn't it true for the symptoms I am having now?  I really don't want to take the Solumedrol because it makes me feel like garbage and I have read it can damage bone density, but I am also afraid that not doing it will cause more permanent from whatever lesion is acting up to cause these symptoms right now.  I think it is interesting that these are the same symptoms I had only 6 or 7 months ago.  This doctor also mentioned that I probably have spinal cord lesions based on the symptoms I described.

HELP!!!  Should I take that Solumedrol?  Will I damage myself if I don't?

Thanks for any input!
Erin
7 Responses
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Avatar universal
Any additional opinions / thoughts?  This was getting pretty far down the list, so I thought I would bump it up a little.  :-)
Helpful - 0
Avatar universal
I know.  It was a shock when I found out how much I had to pay, but it is not as bad as it could be.  The university I work for is self-insured (I still haven't figured out how this is beneficial, but hey, it is what it is), so they literally have to pay for the rest of the cost of my medication.  The total cost (see breakdown below from my online insurance login) is $4800 every 3 months, and I pay $400 which leaves them with $4400.  Outrageous!!!

Billing Information  
Total Cost  Deductible  Member Paid  Co-Pay  Plan Paid        
$4,820.07   $0.00         $400.00         $400.00  $4,420.07  
Helpful - 0
195469 tn?1388322888
Your co-pays are horrendous.  My gosh girl.  I really feel for you.  This lovely disease can cost you through the ying yang, no doubt about it.

I was fortunate when I was on Avonex. (which I no longer take)  I only had a $30 co-pay on a three month supply.  This takes into account that the one shot a week amounted to $212.00 a shot, for the insurance company.  After reading your story, I considered myself very fortunate.

Heather
Helpful - 0
Avatar universal
Granny and Heather - Thanks for your comments!

Heather - It hadn't even occurred to me to do another MRI right now because it has only been 6 months or so since the last one.  I personally hate MRI's and we still owe about $600 (after insurance) on my last one - and that's in addition to all our other debt and the cost of my Copaxone (I have a $400 copay every 3 months, and I am grateful it is not more).  Oh, well.  It's something to think about.  At any rate, the next MRI I have, no matter when it is, I am going to ask about including the spine.
Helpful - 0
195469 tn?1388322888
Additional Comment:  Sounds like you are due for an MRI of the spine, with and without contrast dye. And possibly a repeat of the brain, also, since you are in the middle of a flair-up.  The best time to get one scheduled, so the doctor can see what is actively going on....
Helpful - 0
195469 tn?1388322888
Welcome!

Making the call to take Solumedrol is a difficult one.  IF it were MY call...I would say, if I do not have Optic Neuritis with my flair up, I will not take Solumedrol.  PERIOD!

I have found over the past twelve years, that Sol is great for taking control of the ON, but I never saw much improvement in my other MS symptoms.  So that's one treatment I will avoid, like as you say; because of the possible long term side effects to our bodies.

Again, this is your call.  If you are still taking your Copaxone, I would bypass the Sol, unless you are having eye symptoms.

We are glad that you have joined us in our forum.  The support here is the best I have found anywhere on the Internet.  You will be surrounded with love and compassion, by those one the forum.  They are literally "Angels with Invisible Wings."

I know it's tough to be going through a flair-up...I'm in a bad one myself, but this too shall pass.  Let us know what you decide on the Solumedrol.  I personally think it's a Neurologist, "cure-all."  He can't really do anything medically to stop the flair-up in it's tracks, so he does the only thing he can, offer Sol.  I guess we can't blame the Neuro's for doing that.  Their hands are tied, so to speak.  As you will find out by being here, there are plenty of Neuro's that need to be hung up by their toes and beaten in "Time Square," for their insensitivity and lack of compassion.  We around here call it the "Weenie Roast."  You will read alot about it...

Hang in there.  You are not alone in any of this....I promise you that.

Best Wishes, Heather
Helpful - 0
199882 tn?1310184542
Hi, and welcome to our family.  I'm sorry you have MS.  I think your gonna love it here.  The people are so caring and loving.  We also have a lot of fun at the expense of some pretty lousy doctors sometimes, but that's okay.

I'm sorry I can't answer your question but I know someone will before long.  Once again welcome and I hope you enjoy the great company here.

I'll be praying,
Carol
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