New Member Introduction

[Guest guest]

Hi.  My story goes back three and half years.  I've had epilepsy since I was 16. I also have bipolar disorder.  In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done.  So I had an insurance change from United Health Care to Medicaid.  Up until this time, I had been seizure free for about 10 years.  Until October of 2007, when I had a seizure out of the blue.  Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong.  It showed white matter lesions.  To this day, I think the seizure was caused by MS.  He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face.   (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication).  Around this time I was also having other symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm.  The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced.  He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation.  Of course, the spinal tap came back positive.  I was immediately started on Avonex.  He wasn't concerned about the Avonex causing seizures, but I was.  Three days after my first injection, I had another seizure.  Two minutes after getting out of the car.  I ended up basically breaking my butt, but it took three months to get a confirmation of that.  Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them.  I made the decision then that I would NEVER drive again.

On Avonex, the " flu like side effects " were severe, keeping me down half the week.  Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving.  This was my first time having a full month long flare.  The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia.  I wasn't so sure, but I continued with the medication.  Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week.  I took the medication break, but I also asked to see an MS specialist.  That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis.  Luckily, they had a nationally recognized MS clinic, and the entire neurology deparment was considered the best in the country.  ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone.  About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working.  That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness).  Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc.  By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40.  She put off changing my medication until there was more proof that the Copaxone had kind of tapped out. 

Well, she got it.  On May 12, I started feeling like I got hit by a truck.  May 13 I started with severe nerve pain in my skin.  Sometimes its bad and sometimes its not so bad.  At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day.  So far this has gone on for over three weeks.  Once I got in to see her, she said it was pretty much a given that I need to change meds.  Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication.  To be truthful, every flare I've had I've felt like I was close to having a seizure.  Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system.  Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina