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| René Part 13 January 9, 1998 My stamina is staying ... I've decided to keep doing my naps, mainly out of boredom! I have no trouble sleeping during this time, (1:30 p.m. to 4: p.m.) but exhaustion isn't the reason. Noticeable changes are that while I'm laying in bed in a slightly raised position (I use a hospital bed) I can rub my right eye with my right hand or knuckle. When I say "Rub", I mean once in one direction not both ways.(I haven't been able to do that in at least 1 1/2 years!) I use a lot of energy doing this, I can do it every 10 minutes or so...It does wear me out but I CAN DO IT! I can't use a finger tip because I can't straighten my finger for any length of time... yet! This one may be hard to explain... while laying in bed, if my right arm (hand) gets tangled in the sheet, I can't get it out of the tangles. Usually I keep the top of the sheet hem in my mouth to pull and keep the sheet taught, otherwise I won't be able to use the hand controls that I press with the side of my hand. It takes a great deal... but now...when this happens I have the flexibility and stamina to get out of the tangles! I had some hair that was "Tickling" my right ear (while laying in bed) I used my right arm again to move the hair away!... Usually I would have to lay there and ignore this, it's wonderful and amazing that I can brush this hair away! This all sounds small... but these are actions that I haven't been able to do in a very very long time. I can also open my hands flat on my stomach (I may have told you that) while laying down. Sitting in my chair I think there's too much going on for my body to be relaxed enough to do these things. My nerves and brain are busy keeping myself upright and balanced! I should also say that I've tried doing these things on a regular basis for a couple of years... these successes are New! My face doesn't feel as thick or heavy. That may sound weird... but MSers with that thick or heavy feeling will know what I mean! ...My face doesn't feel as drawn. I'm not urinating as much... I'm drinking the same amount of fluids... bowels are still every 2 or 3 days, that's a MSer first!!! I'm making arrangements to change the protocol for treatment, (I'll have to look into it a little more) instead of treatment once a month at 20mg, I'm looking into every 3 months at 12mg... Dr. Kornhuber's protocol is using 12mg not 20mg every 3 months and the success rate is good... The side-effect of Mitoxantrone is its cardiopathy. In cancer therapy the estimated incidence of congestive heart failure is 1.3% and less than 10% experience with a cumulative dose of 160 mg/m^2. Cardiac monitoring is recommended in patients with preexisting cardiac risk factors where a cumulative dose of 100 mg/m^2 has been received. In other patients 160 mg is considered as the critical dose....I'm not in that category! At 20mg I could have 8 treatments without possible risk. At 12mg I could have 13, (nice number!!) at that point Dr. Pomeroy and I can evaluate my situation... both protocols work... ...So I'll "Cross that bridge when I come to it"!!
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