Well I guess the Multiple Sclerosis vacation is over. I decided to take some time off from the MS and I accomplished what I thought would never happen – days without thinking of the disease. I also took off approximately 3 months from taking injections. Hiding as I may the MS finally caught up with me and it’s back to exacerbation and injection time. Still a mild exacerbation – the numb feet and the girdling around the legs. Well I guess back to the grind.
Well had another neuro appointment today. At least I am doing well, but that makes me like going even less. The only reason I mustered the energy to go was so that I could get order to make sure my liver is hanging in there. I certainly don’t want it to fail on something not fun like Rebif! Eriksgirl asked why he doesn’t write anti-depressants. After a brief discussion he said he does, but does not write Wellbutrin. Of course his medical assistant did not make that clear. Apparently, this stems from the original Wellbutrin had a seizure rate of 1 in 200 as compared to the antidepressant norm of 1 in 2000. He said this has supposedly been fixed in the Wellbutrin XL (what I was taking), but he is biased against them now. Of course I would have happily tried something different had the MA made that clear. Of well, hopefully no more Solu-Medrol and the need for antidepressants.
In July I emptied out my sharps container to get a picture of my first 2yrs. Certainly a lot of memories and emotions tied up in all of this mess. It seems so long ago that I was diagnosed, though I certainly remember wondering if I would ever get over that first exacerbation. Of all things the needles are a reminder of the transitional time from diagnosis, and life not being normal, to now when things have long gotten back to normal and are very happy!
I was thinking the other day, as I was listening to some story about a heroine addict, that I get all of the pain from an injection without any of the fringe benefits. Nobody is going to be a Rebif abuser, it hurts yet doesn’t make you happy. Hence, I propose that Serano should sell additives to Rebif to make it more appealing/addictive. It would be so much easier to take when I was “forced” to take my Rebif hit, or just because I wanted my Rebif hit (hey I can quit anytime I want to! ;-). Plus, this has the added advantage of additional revenue for Serano. They would still ship you the base Rebif product, but then provide “add-ons” that you could pull into the syringe as needed. Here are a couple of my product ideas:
- Caff-Rebif: When you just need that extra kick to get you going. It would definitely get me to switch to taking Rebif in the morning! 😉
- Meth-Rebif: When the caffeine just isn’t doing the trick anymore and you definitely need a bigger kick to get you going.
- Canna-Rebif: When you think your memory couldn’t get any worse, and don’t mind the munchies, but want to abate some of the MS symptoms without having to smoke something.
- LSD-Rebif: When you just need a break from reality.
- Val-Rebif: When you’re just too wound up and need a little valium to take the edge off. I definitely could have used this when I found out about this year’s insurance! 😉
- Ari-Rebif: When you need a little extra clarity that only Aricept can provide.
Of course there truly are endless possibilities. Sadly, I don’t see any of these hitting the shelves anytime soon. Maybe someone needs to start a DIY site to make your own additives. 😉
Sorry for the length but I am already going to leave a ton out as I try my first year of the disease. I will probably do a couple of follow up posts on specific issues I have not covered in this.
My first exacerbation came in August of 2002 – though I did not realize it then and came in the form of numb feet. It started at my toes and moved back towards my heel. I lost some toe motor control but who really misses that? I had recently just gotten some new inserts for my flat feet so I blamed them that they pinched a nerve in my foot so a little after a month and no wearing the inserts it got a lot better. This was probably brought on by a period of extreme stress.
Fast forward to March of 2003 and once again I hit a much worse period of stress (obviously a massive trigger for me) caused by my wife being sick and needing surgery. At this point my right hand started losing sensation. I did not think much of it as it started with the right side of my right hand and got worse from there. I thought it was just a pinched nerve in my elbow that I was irritating in my sleep and so tried a couple of braces one that I bought and one that I made. I also tried to “help” the swelling compressing the nerve by taking Naproxin Sodium (Aleve) and Ibuprofin (Advil/Motrin) which of course did not help because it was not a pinched nerve. During this time it spread up my right arm and my left arm too and I was starting to lose motor control. After 6 weeks I went to a neurologist that my wife used to work for. My Nerve Conduction Velocity (NCV) and Electromyography (EMG) both of which came back extremely good for my age. Pretty bad was I was not able to touch my finger to my nose – I touched my forehead instead. I also had trouble touching my thumb to the tips of my finger. So I went for blood tests and a MRI. The MRI turned up the normal MS lesions in my brain and spinal cord. I also had a lumbar puncture (spinal tap) too which also indicated MS. On a side note I got a “mild” spinal headache for a couple of weeks after that LP procedure – I guess it could have been much worse.
Here is a little about the symptoms when it got to its worst – while it was bad it all got better! It impacted my ability to work because I had trouble typing (I am a Systems Administrator) and using the mouse. In fact at the end I could really only use my index finger of either hand and had to switch to using the mouse left handed because that hand was a little better. I also had to write left handed because it was no longer possible with my right hand. Eating got very difficult and I couldn’t cut anything. I could no longer button my dress shirts or dress pants of which my wife helped me (which I mean did it for me). I could hardly wipe my butt after going to the bathroom but managed to barely do that left handed. (While both hands work now I do still tend to wipe left handed 🙂 I also had significant troubles bathing and had a lot of trouble getting clean – mostly because I would drop the soap so many times. I also lost almost all hearing my my left ear (it sounded very metallic and otherwise hard to explain) and significant loss in the right ear.
I took IV Solumedrol (see a later post for details on the Solumedrol treatment) to get over these symptoms and Rebif (see a later post for details my experience with the injection) to keep the exacerbations at bay. I have had a couple of exacerbations since (see a later post for details on those) but they have been very minor in comparison. I also got a little depressed – though I didn’t see it as such right away – but am doing much better now taking Zoloft (see a later post for details on the depression).
As it stands now I am doing really well and have virtually no ill effects from prior exacerbations. All my hearing is back. I have 95% back in my right hand (sometimes better) and 100% back in my left hand. I can probably still type at 40 word per minute which is more than acceptable though my accuracy isn’t as good as it used to be – no big deal I just use the delete key more than I used to. 🙂 So far it has been true what they say that the first exacerbation is the worst (though I guess technically it was my 2nd but my first after diagnosis). I kinda wonder if mine went on so long this time from the stress of being diagnosed with MS and mostly the fear of what the future holds.