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Heather Brokaw's Gilenya Diary

Gilenya Pack

May 4, 2013

I suppose I should start with my diagnosis, way back when…… March, 2001 I started to feel a tingly numbness in my feet. Maybe I’m just tired I thought, since I had been hosting a birthday party all day. So, I went to bed. I wake in the morning and this “tingle” is at my knees. Now, I KNOW something is not right, but there is a huge snowstorm and we live in the country where roads are basically impassable. I take it easy for the day, and sleep another night. Day 3, I awake to this wonderful tingle all the way up to my waist. Snowstorm or not, I am DEFINITELY getting to a doctor of some sort this day.

I get to the emergency room & tell them the 3 day story, upon this information I begin my poking, and can you feel this, and wonder WTH is wrong?? I get a lumbar puncture, and have to lie flat for 12 hours, so begins my 6 day hospital stay. I go through about every test in the book for 3 days, THEN the powers that be decide to FINALLY do an MRI. Within an hour of this test, I have a diagnosis.

I was totally alone when this news came, let me tell you some doctors really need to take courses in compassion, and not be so forthcoming. My then boyfriend had left just before my MRI to get my children who hadn’t seen me in 3 days. I was devastated. This was a death sentence to me. I was 26 years old with an 8, 9, & 10 year old. I had NO clue what Multiple Sclerosis was. I only knew that Annette Funicello & Richard Pryor had MS, and that they were both in wheel chairs with severe issues. I tell you what, I cried and cried and cried some more.

My neurologist told me I would need to begin steroid treatment right away, and the 3 day drip began. Apparently everything is 3 days for me at this point. On that 3rd day of steroids, I learn about a drug, Avonex. I also learn that I will have to stick myself with a needle once a week for the rest of my life. Not a pretty picture.

I go about all the niceties of this drug. I end up being a good girl & keep the Avonex for 9 months. By the end of this time, I was so anxious about the side effects that I couldn’t do it anymore. Day 1: give myself a shot, Day 2: be in bed all day with flu like symptoms, Day 3: try to get over the flu symptoms, Day 4: start thinking about giving my next injection, Day 5: contemplate quitting Avonex, Day 6: have a good day, Day 7: worry about feeling crappy again after tomorrow.

This cycle was enough to drive me mad. So, I quit. I just quit. No warning, no telling my doctor, just quit.

Now, I know I shouldn’t have done this in retrospect, but at the time, I was done with MS. Yeah, sure, it wasn’t done with me, but I was invincible at 27 years old, ya know?

I didn’t have any disease modifying drugs after that for about 2 years. At that time, I began Copaxone. Great, now I have an injection every day. What was I thinking? Oh, right, that I wouldn’t have those horrid side effects of Avonex.

I stayed on Copaxone for about a year. Then, you guessed it, I quit! I was so sick & tired of injections, and rotating spots, and numbing with ice, and all the crap of Copaxone. Once again, without telling my doctor.

Fast forward about 5 years, yes 5. I had minimal problems with MS, and just thought I never needed any help. Well, then I started to change my mind, as I figured I was on borrowed time with this. I talked with my neurologist and began Tysabri.

Hell, it was better than shooting myself with a needle, right?? Once a month, go to the infusion center, sit in a big comfy chair, and wait while this wonder-drug coursed through my veins and then the observation hour. Simple, simple, simple.

I found out about 2 years in that I was positive for the JC Virus, which means I could very well develop a wonderful brain infection called Progressive Multifocal Leukoencephalopathy, or PML for short. Most people would probably be warded off from taking this drug after such a diagnosis, but not I! I decide that the benefits greatly outweighed the risks. I continued with this drug for about another 6 months, until November of 2012.

Now, I changed neurologists for the umpteenth time back in January. I had been curious about Gilenya. He recommended I begin treatment with this pill. He in no way was going to recommend that I continue with Tysabri. The risk of PML was too great. FINALLY, I have found a neuro that kinda sorta listens to me. I began all the tests, shortly after this discussion.

I had a new MRI done, no new lesions in 3 years! The Tysabri was actually working, too bad for that damn JCV. I had my initial EKG done, since there is a risk of slowed heart rate with this drug. Normal. I had blood work done. Normal. I had a Pulmonary Function test done. Almost normal. (I need to quit smoking) Then the wait……

Apparently after you stop Tysabri, you must wait 6 months to begin a new DMD. Today is 6 months. My first dose of Gilenya is Thursday May 9th. My husband has taken the day off, along with the following day, in case of any complications. (which I know I won’t have [fingers crossed XX] )

I will continue to try & keep up with this diary, and be online on Facebook during my initial dose. This Gilenya Diary is therapeutic, and I thank MS-UK for the opportunity to share. Thank you all for listening to my story; and here’s to many more “good” days ahead.

Heather Brokaw