Friday, April 9, 2010

Two Weeks to Go... and Symptoms

Gee, in two weeks I'll be on my way to Poland.  It's got me thinking that I should write up an "inventory" of my symptoms so that if/when I am "liberated" I'll be able to track any changes that occur.  So, let's see:
  1. My left leg is weak and somewhat unresponsive, with a definite "dropfoot" tendency when I walk.  Since I've had this symptom for more than two years, my muscles in the entire leg and buttock are weaker and smaller than those on my right side, despite the fact that I exercise at least an hour almost every day.  I can now only walk a few hundred feet and use a cane when I do that.  Walking any short distance around campus (which has lots of slope and stairs) feels like an expedition.  Over the last few weeks I've been trying an electronic "walk aide" and then a brace lent to me by the physiotherapist at the rehab centre.  I'll decide about them after I get back from Poland.  By the way, I've been working with the physiotherapist to establish some mobility benchmarks, so any improvement I might see after Poland can be more objectively measured.
  2. I sometimes get the strangest feeling, like something between a shiver and a slight seizure of some muscles when I do things like get up out of a chair, stick my foot in cold water, or accidentally stand on some small object with a bare foot (walking on crushed rock in my bare feet is absolute torture).
  3. Both hands are always numb... like the feeling you get when you're hands have been exposed to very cold wind or water for too long.  Some days it's mostly just the numb/tingly feeling with a sense that I have lost a lot of sensation in them (like I'm wearing rubber gloves), while other times it gets so bad that they feel like hams at the end of my forearms.  At those times both arms also feel heavy, like they're made of concrete.  At all times now I find I drop things from between my fingers without realizing it's happened.  On bad days I find that I have trouble with eating utensils slipping out of my hands or turning around in them.
  4. My fatigue varies considerably from day to day and week to week.  Some (rare) days I only have a few spells of suddenly feeling quite tired, but on bad days I might have to have several naps during the day, with a feeling of such fatigue that I can hardly keep my eyes open.  On the other hand, I almost never get to sleep without using a sleeping pill.
  5. I always have a pain or irritation in my left hip, which at its worst can be a radiating burning (sciatica) pain all the way down to my heel that lasts so long that it upsets my stomach.  At its best it's an irritation that makes it uncomfortable to sit still any length of time.  This symptom might not be directly an MS symptom, but rather a result of my unnatural gait.
  6. I haven't had as many "bathroom problems" as I did a few years ago, but then I've been taking pills that mean I don't feel I need to "go" as often as I did in the past, so that might be part of the improvement.  Of course, one of those pills that didn't work out gave me a really dry mouth and throat, and seems to have resulted in a chronic post-nasal drip... or at least I hope that's why I've had more swallowing difficulty since I tried that pill.
  7. Although I've had the feeling that I've been getting more forgetful (names, words), I did do a battery of tests where I was found to be OK "for a guy of my age"... I guess I can't blame it on my MS after all.
  8. I notice that I haven't had those phantom pains (especially in my legs or groin), the ones that feel like someone stuck a pin in you, as often for the last year or so.
  9. On the other hand, I have been experiencing cold feet and, to a lesser extent, cold hands.  It's a feeling that comes and goes, but at it's worse my feet feel like blocks of ice, to the point that it feels painful.  Not only do my hands and feet feel cold to me at those times, but they are cool to the touch, as well, according to my wife.
  10. The back of my neck (just below my skull) seems to be always sore/stiff lately... but maybe that's just something I've noticed more since I learned about CCSVI.
  11. I've had my eyesight checked recently, and though I no longer have the "better than 20/20 vision" of my youth, it's probably just deterioration related to my age.  Nonetheless, my optometrist is going to give me a copy of the results of the battery of tests he did so that I can take them to Poland with me.
  12. Something that I haven't had for a long while (or at least as badly) is heat intolerance, which manifested itself as great fatigue and lethargy if the weather was very hot.
Well, that's all I can think of (that I want to talk about) - if I think of anything else I'll edit this post.

3 comments:

  1. I'm 8 years older than you, and have in the past year experienced the same frustrating experience of forgetting words (in particular) - your item #7. No medical condition to explain it - so I guess it must be a sign of aging. But what a frustrating experience!

    Had the same dull soreness at the base of my skull (your #10), on the right hand side, as if something was growing there, but the doctor said it was where a particular muscle is located. So I applied a cold pack and then a heat pad to that location a few times and - gone!

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  2. I FULLY BELIEVE THAT THE MS SOCIETY IS BEHIND THE DELAYS IN TREATMENT OF M.S.
    THEY ARE AFRAID THAT THEY MAY LOSE THEIR HIGH PAYING POSITIONS IF A CURE FOR MS IS A SIMPLE PROCEDURE SUCH AS OPENING UP BLOCK VEINS IN THE PATIENTS NECK.
    I HAVE SUPPORTED THE MS SOCIETY FOR YEARS BECAUSE MY SISTER AND NOW MY WIFE HAVE MS AND HOPED THAT PERHAPS A CURE WOULD BE FOUND BUT I WILL NO LONGER SUPPORT THE MS SOCIETY AS I FEEL THAT THEY ARE BEHIND DELAYING THIS MEDICAL PROCEDURE.

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  3. My husband has had MS for going on 22 years. The liberation treatment is the first real hope for a cure to this terrible disease. I was told that if someone without MS had this problem with the narrowed veins, the vascular surgeon would open them right away. As soon as it is mentioned that you have MS the government is saying, No, sorry, you cannot have this procedure because it is not covered under OHIP. Perhaps we need to hire a lawyer to launch a class action suit against the provincial and federal government under our human rights act because people with MS are being discriminated against. However, this all takes time and people with MS don't have that time. It is awful when you think we are living in one of the best countries in the world and people are going to India and Poland to have this procedure done. Shame on our governments!!!!!

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