New to ThisIsMS but not to RRMS

[NLGal]

I can’t believe it took me so long to find this site - and it was quite by accident! Well, here goes with my story of MS (and what lead up to it).

I got my first migraine in December of 1989. I spent many years fighting the debilitating pain. I took pain medication to stop them. I took prescribed medication to prevent them. Hell, I even washed said medications down with alcohol (not recommended by the way). Nothing worked and I was fed up. In October 2003 I sat in my doctor’s office and asked for more in depth testing since nothing was working. I was sent for a CT Scan. Unfortunately the contrast agent gave me a blinding migraine, literally. The nurse on duty was kind enough to point me in the right direction to leave so I could drive home - thank you dear, I didn’t run anyone over on the way home. A week later I was in my doctor’s office at 9:00 a.m. after getting a call at 3:00 p.m. the day before. That should have told me lots - you don’t get in to see my doctor that quickly unless there’s a major problem. Well, I was (mis)diagnosed with a “suspect neoplasm” (aka cancerous tumour) and was told to expect surgery before Christmas. Didn’t see that one coming. I was scheduled for an MRI three weeks later after which I had to wait around to see the neurosurgeon. He showed me the scans and proceeded to explain where the “tumour” was and what activities the brain undertook there and how easy it would be to access. I heard little - I was fixated on that glowing bright spot in my frontal parietal lobe. A couple of weeks later I had another MRI only to be told that the bright spot was less impressive (surgeon’s words, not mine). It had actually gotten smaller. Why? The only thing that changed was that I was on a course of anti-inflammatories. Therefore, no tumour! Yay! Just a UBO (Unidentified Bright Object). I was told to go home and enjoy Christmas, which I did.

In February 2004 I saw my first neurologist who did all kinds of neurological testing - reflexes, strength, pupillary reaction to light along with a bunch I don’t even remember. The reflexes in one leg was slow. Yup - car accident - pinched nerve. The pupil in one eye didn’t react to light properly. Well, yeah - baseball bat to the head as a child might have something to do with that. Feel that lump? Still there nearly 30 years later. And so it went. For everything she pointed out that wasn’t “right”, I gave her a plausible explanation. I then was sent for an a lumbar puncture - just to rule out MS. Never, ever again! I had a migraine for a week straight. After that an evoked potential - just to rule out MS. Not something for anyone who gets motion sick easily.

A month later I was back in the neurologist’s office, only to be told that the tests were positive. Okay, what exactly does that mean? Positive in a good way? Or positive test results? Well? Speak up woman and let me know! She seemed genuinely surprised to tell me that the tests that were supposed to rule out MS actually confirmed that I did indeed have MS. I had only two questions - where do I go from here, and what do I do about my migraines? Had I not been told I had a brain tumour a few months earlier, I would have had a different reaction. But, hey, at least I might have some control over this. Unlike having someone root around in my brain taking pieces out after having removed a section of my skull.

My first course of MS therapy was Copaxone starting July 2004. That lasted six months. My immune system was suppressed to the point that I became allergic to the injection itself. Okay, what’s next?

I went on the hunt for my next course of treatment. My second, and current, neurologist (first one left) did a bunch of tests again. Reflexes slow - pinched nerve. Pupil not reacting right - baseball bat to the head. Did I not say all of this before? I was pretty much told to be quiet, step back and look at the bigger picture instead of the individual components. It all made sense. The symptoms were all there - I had RRMS. We considered a number of double-blind studies that were on the go but we had to rule them out because some of the trial medications were cultured in egg. Not a problem for most people - same as a flu shot, no big deal. Me? I’m allergic to eggs. And I’m not talking just a rash. I’m full on anaphylactic. Ingestion of egg means I can’t breathe. And I’ve become rather accustomed to breathing and I rely upon it heavily. Oh well, what else was out there?

In 2006 a new study came to town - Teriflunomide. Quite a mouthful and even harder to spell. In May 2006, I enrolled in the third stage of a double-blind study using Teriflunomide as a treatment for RRMS (placebo, 7 mg and 14 mg). For two years I took one pill a day. Nothing changed with my health other than I became completely sober (no alcohol allowed). I continued to have sensory relapses regularly. So, placebo it was (self-assessed).

In early 2008 I entered the next phase - guaranteed 7 or 14 mg. Within six months I lost 50 pounds and a lot of hair. (Yes! I was right! Placebo!) I didn’t mind losing the weight, but the hair? I was devastated! It felt like I was losing handfuls each time I brushed it. So, I stopped. For nearly two years all I did was run my fingers through my hair. My hair was always straight and rather fine, and I didn’t want to lose any more than I had to. Eventually it grew back in - thick and wavy. I had more hair than I knew what to do with. It took about two years for my body to adjust to the medication. I no longer lost three pounds overnight if I skipped my evening meal. Yeah, that was an unexpected treat that nearly got me removed from the study. And my sensory relapses had all but stopped. I’d have one every 18 months or so.

For those of you who have never had a sensory relapse, it is quite entertaining. You go to bed feeling fine and wake up the next morning, ready to take on the world. You go through your morning routine - trip to the bathroom, dress, brush your teeth, brush your hair. Huh? I can’t feel my scalp! What the?! Okay, wash my face. Wait. What? When did I get a shot of novocain? I can’t feel my jaw line! Once you stop obsessing over it, it becomes a source of amusement. Oh look, I can stick a pin into my face and it doesn’t hurt. Can you do that? No? Didn’t think so.

While I have experienced a number of side affects (yes, I’m that 0.1% of any test group that has obscure side affects that results in a warning), one side affect of the medication that I really and truly didn’t like was the loss of some sensation and dexterity in my hand. It was gradual so I learned to adapt. No more stick pens - thicker pens with nice grips. Blouses with buttons? Nope. No longer part of my attire. Arch nemesis be gone! I kept dropping my fork so I learned to eat with my other hand (that was fun, especially in public places). I also noticed that with the loss of sensation came the inability for my hand to know what the ambient temperature was, so it was always colder than my other hand. Interesting.

In February 2014 I graduated from Teriflunomide 7 or 14 mg to Aubagio 14 mg. And guess what. More hair loss! Well, I guess I was on the 7 mg dosage before. So here I am now, eleven months and one more relapse later and my hair is growing back in again and it’s still wavy.

I do have my frustrations with MS and the meds. I have lost a lot more sensation in my hand and arm after starting the 14 mg regime and my hand is cold to the point of turning a light shade of purple. I’m constantly apologizing after shaking hands because my hand is so cold. Crafts that I have been doing for over 40 years are difficult now so I have to pick and choose which I want to do so that I’m not frustrated with my inability to do it. I have days that I forget how to type which is annoying since I learned how to type when I was ten and it’s part of my job. I had one day a few years ago when I forgot how to drive while getting ready to take an off-ramp at 100 km/h. Now some of you may think, “What’s so hard? Point the car in the direction you want to go, hang on and it’ll happen”. That may be so, but when you need to slow down it becomes a little more challenging when you forget how to change gears in your manual transmission car. That has only happened once, thank goodness.

I once said to a friend, why me? Her response was, why not you? Exactly. Why not me? I went into the Teriflunomide study with the attitude that while it may not help me, it might help someone else. I am fortunate - the treatment has helped me tremendously. And for those of you just starting Aubageo or any other treatment - hang in there and give it time.

I had hoped to give the Readers’ Digest condensed version but I don’t think I succeeded (and I left lots out!). So I’ll stop typing now. Besides, my hand is freezing!

[lyndacarol]

Welcome to ThisIsMS, NLGal.

However you managed to find this site… we are glad you found us.

What a medical journey you have had since December of 1989!

[NLGal]

I'm glad to be a part of this wonderful forum. Funny enough I found it while looking up Aubagio side affects. I still can't figure out how this forum escaped me all of these years with the amount of internet prowling I've done. My journey started years before, and took some interesting turns in between, but I'm taking it one step at a time, albeit shaky at times - especially when descending stairs. But, it's laugh or cry, and I'm done with the MS tears for now. As time permits, I hope to contribute more - especially in the Aubagio forums.