Starting Treatment?!?

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New Member

Date Joined Sep 2010
Total Posts : 2
   Posted 9/30/2010 6:13 PM (GMT -6)   
shocked   Ok, here's my situation.  I was diagnosed with regressing/remitting MS in 2000 @ age 25.  I had an initial episode where I stood up and fell to the right.  The entire left side of my body went numb from the tip of my nose to my back.  I had no gag reflex and no eye reaction when stimulated.  I was treated for an inner ear infection for 3 weeks.  I finally went to a neurologist.  The MRI revealed 2 lesions.  The episode subsided and I  had NO flare ups in ten years, with no treatment.
Two weeks ago I had a flare up.  I was walking into walls (to the right), vision was askew, among other symtpoms.  I was hospitalized for 3 days and received IV steroids, followed by 10 days of Steroids by mouth.  I have an appt. tomorrow with my neurologist who thinks it's time for treatment.
My concerns........I didn't have a flare up in 10 yrs, if I had been on treatment for 10 yrs, with side effects that could have made me feel like I had the flu, it would have been for nothing.  Do I keep flipping the coin, or do I go for treatment at this point. My neurologist is talking Tysabri, but I see that it is used when other treatments are ineffective.  Anyone have any issues with PML?  Anyone on Rebif, Betaseron or Copaxone?  Looking for guidance here - Thanks

New Member

Date Joined Sep 2010
Total Posts : 2
   Posted 9/30/2010 6:14 PM (GMT -6)   
I forgot to mention that a new lesion was discovered on my cerebellum with this flare up

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Date Joined Jan 2007
Total Posts : 3568
   Posted 9/30/2010 6:41 PM (GMT -6)   
I have been on Copaxone for 4 years.  Copaxone is not an interferon so there are no flu side effects.  It does sting and you are left with an itchy lump for a few days.  Since you inject daily, you are chronically a bit lumpy and itcy.  I don't have any real issues with it.  It is pretty simple.  I don't think about it much at all; it become like brushing your teeth or showering or whatever. 
There is no way to know if being on a disease modifying medication would have made a difference over the last ten years.  I would no way take tysabri as a first med.  I am not sure your insurance would even allow that due to its expense.  I wouldn't take Tysabri anyway, but that's just me. 
Oh by the way, no med. stops this disease.  They only slow down things (if they work for you).  I don't know anyone that has gone ten years without a flare either on or off meds.  You did really well to do that long.
By the way (#2) it's "relapsing/remitting MS"........also known as RRMS)
Best of luck!  I hope you can find something that will hold things off again for at least another ten years. 
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