May 122004
 

I just got off the phone with me dr. as I write this (4:40 pm). I have had a rash of new symptoms for a couple of months now. Some of the new stuff was MS Pain (I will go into more detail later), Itching (I will go into more detail later), and very recently foot numbness and leg weakness. The later is what I called the Dr. about. I asked his personal recommendation at this point and he said to wait a week and follow up with him to see how I was doing – this is probably because he knows me aversion to solu-medrol because of the bad attitude it gives me. He said after a week if it hasn’t gotten better then he’d probably prescribe oral high-dose Decadron. He said most studies indicate that it is just as effective as Solu-Medrol. He said if that didn’t work than he would recommend proceeding with Novatrone to nip it in the bud. I really don’t like the prospect of that – and told him as such – but I really don’t think it will come to that. He also said that the side effects to Novatrone are much better than Solu-Medrol. I told him whatever is necessary it is OK to proceed with.

He also expressed concern that I have had a couple of exacerbations back to back while on the Rebif. He countered by saying that who know what they would have been like on nothing. He said he would be eager to see the new MRI’s come July to see if there has been a lot of activity and then deciding what to do then. I certainly want a drug that works now because now is the time to control the symptoms to prevent disability.

We also went on to discuss my Zoloft dosage because while it has helped a ton I am still a little sensitive at times. It is much less frequent, much less severe, and I am able to keep it hidden. I asked him what I should expect from the Zoloft. He said that I am on a very low introductory dosage and most people are on 100mg to 200mg so he bumped me to 100mg. He said that since I tolerated 50mg so well I shouldn’t see any ill effects in moving to 100mg. He also offered to have his staff call in a prescription but I said I have plenty to double-up on until our next appointment when we can evaluate how well it is working.

May 022004
 

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.