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A Place where I can spout off about anything . . . and often do 

MS and other ailments

About 1995, I discovered I have Multiple Scleroses. The funny thing is, I had just selected a new doctor because I had just joined an HMO. I called and asked for the name of an MD who was younger than me, since I wanted a long term relationship. The new doctor gave me a very thorough physical and as part of the first visit also asked me about my general health. I explained that I occasionally got migraines and mentioned a few other things, and said also that I was pretty sure I had M. S. I got a very strange look back but he did order a CT scan. The scan showed nothing, but after a few years I continued to complain of the mild tingling sensations I was having and other minor signs, so he sent me to a Neurologist who ordered still more tests, including an MRI and one of those ridiculous tests where someone puts electrodes on your scalp and flashes light from a TV monitor in your eyes. The MRI showed nothing unusual but the other test suggested M. S. or something similar. I was diagnosed with “probable” M. S. and sent on my way. Later the diagnosis became more definite as future MRI’s showed the telltale signs of the disease.

My family MD said, “expect interesting symptoms”. He was certainly right about that. Some of the interesting symptoms included a sensation of flashing lights when I was in total darkness, as well as an intense pain that would show up at random and move around my body, almost by the hour, then leave sometimes for a month or more.

It is of course the less interesting symptoms that bother me the most. I have lost a bit of vision in my left eye, and the real bummer is that I have almost no sense of balance. Now, of all the senses you could loose, you wouldn’t think that one would matter much, but believe me, it does. I find it necessary to carry a small flashlight everywhere I go in case the lights go out. I can only remain upright if I can see a horizon.

The progression of the disease has been very slow because I’ve been taking a very expensive drug that I have to self inject once per day. When the drug first came out I got a prescription from my Neurologist and took it the the Pharmacy. The stuff costs well over a thousand dollars a month, and the Pharmacist told me it wasn’t covered by the HMO. I looked at the contract, and darned if it didn’t say that injectable drugs were not covered by the plan. I called the HMO and asked the person on the other end of the line why, and she actually said, “because they usually cost more.” The answer was certainly honest and to the point, but can you imagine how it makes you feel? Fortunately for me I got a chance to enroll in a different plan a few months later when the TV station I worked for was once again sold. This time when I called to ask about the drug the representative said “why wouldn’t it be?” I’ve was on the drug for over a decade and although I walk like a drunk, I’m still working. I did, however, voluntarily give up flying airplanes and driving motorcycles. If my sense of balance ever comes back the first thing I’m going to try to do is get the required medical certificate that is needed along with the pilot license I already have to actually fly an airplane again. By the way, the HMO I mentioned earlier now covers injectable drugs.

(added 7/18/2008)  Today I started a new drug called Tysabri.  The injectable drug I had been using helped for sure, but left me using a cane, and I would say that using the cane was often not nearly enough sometimes.  So at over $3000 per monthly dose I started this new drug today.  I had to have it administered over the course of an hour by IV, and then it was required that I be observed for another hour to be sure there were no side effects.  That's pretty scary stuff to be sure, because they make you sign a waver every time you get this drug stating that you have read the black box warning and know that there are dangers.

(added 6/21/09)  So far, worldwide, 9 people have died from complications from this drug, but I have continued to use it since I wrote the above paragraph. MRI It would seem to have had little effect  improving my condition, although it seems to make me feel stronger for a couple of weeks after each infusion.  I just had an MRI to assure that there are no complications apparent from it's use.  I should have those results soon.  For those who are considering it's use, the nurses at the hospital where I receive these infusions tell me that many users say they have seen signs of improvement and indeed the manufacturer of the drug has data indicating that for some there is actually a turn around for some.  I am no worse, and that is reason enough to continue as long as I can.  (I'm 62 and I doubt if I will be able to afford it after I retire.) 

I don't know how to read an MRI, but I suspect that the white spot near the right side of the above film is evidence of MS.  By comparing the new set with an older one I would hope that the doctor who reads this can tell if the drug is helping.  By the way, when you leave such a facility any more, they are more likely than not to give you the films or a cd with the images to look at yourself.  I find these thing very interesting.  Years ago I had a hernia operation, and the doctor printed out a picture showing all my guts.  I took it to work and grossed out several of my fellow employees who would probably never consider surgery now if their lives depended upon it.  In reality it was taken with a very small camera through an incision about an inch long!  I'd post it here if I could find it.  What really bummed me out about that operation is that I had to have it repaired a year or two later, but they don't give warranties with operations, so my insurance company and I had to pay twice.  This time the incision was larger and the repair was done in a more conventional way, except that I was given the option of having the kind of sedation where you stay mostly awake during the procedure.  I went for it and found it more interesting, since I recall to this day the surgeon saying "I'm going to start the incision now!"  They give you something that makes you not care, and you can feel it, but there is only a strange sensation, no pain.  I would do it that way again if I had to.

(added 8/12) Two years ago I went on long term disability leave and effectively retired. The MS finally caught up with me and I found that I could no longer function at work. I have been stuck in the wheelchair stage and am waiting for the next medical advance to come along. To be honest, at 65 years of age I don't know if it will advance far enough to help me in my lifetime.

I hope I haven’t whined too much. When I was sent to Vietnam in 1967, I was to go into the infantry (I’ve always thought as punishment for dropping out of Officer Candidate School, but that is a whole different story) and when I was assigned to work in an office instead, I promised God and myself that I would not complain about anything bad that followed. When I finally got the diagnosis of M. S. I pretty much took it in stride. I think the worst part of having this disease is that I no longer look strangers in the eye. Many see me walking and seem to think I’m drunk. I used to enjoy looking at strangers, smiling and waiting to see if I got a response. You’d be surprised how it lifts your day if you get a positive response, even though you will probably never lay eyes on that person again.

I’ve also been blessed with a sleep disorder. I’ll bet there are a lot of you out there with sleep disorders. I was up in the middle of the night so much that I actually bought a telescope, and could always tell you where Jupiter or Mars would appear at any given time of the night. I would perceive that I had stopped breathing and would suddenly gasp for air, even while relaxing and presuming I was awake. It turned out that I have Obstructive Sleep Apnea and I would encourage any of you who think you have a sleep problem to talk it over with your doctor. The sleep studies they will probably have you do are a bit strange, but it is real joy to get a good night’s sleep again.

By the way, I mentioned earlier that I used to give myself injections every day. My greatest fear used to be needles. I would pass out at the sight of one headed my way. One sure fire way to overcome a fear is to be compelled to face it.