Hi Wannabe,
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Was it the broken leg that caused Marg to be in a wheelchair? Or that event precipitated MS events which resulted in her being in the chair?
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It was breaking the leg that caused the big problems. Marg turned SPMS in 1996 and was sliding slowly until she started on the Prokarin in June, 2000. Very soon after starting that drug, several of her symptoms started to reduce and/or almost go away. At this point, Marg was using a walker for short distance walking and a wheel-chair for long distances. A few months after being on the Prokarin, she actually only used her cane on a few occasions to walk in the house.
Then that break in March 2001. The next day when they put the main cast on her leg, the violent spasms started. Up until that point, she never suffered from spasms. She was told to go off the Prokarin by her doc because of the danger of blood clots with a broken leg. Within 4 days, all of her symptoms started to return (tingling/burning in the leg, numbness in the hands, heat sensitivity, heavy fatigue etc.) She went back on the Prokarin regardless of what the doc said and within a day or so, those symptoms reduced or went away. But not those spasms!!! They plagued her for the next 4 years before they started to reduce after a lot of physio.
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I'm asking because if it's the MS, I am surprised that she wouldn't have chosen at some point just to give the MS drugs a try, on the off chance that they might work. It's easy enough to go off them if they're not working, but I'm just wondering what she had to lose by at least giving them a try?
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In 1996, the CRAB's had only been out for a couple of years and they weren't for SPMS. He neuro told her they would be a waste of time in her situation. And being a nurse, she didn't like those drugs anyway. And the Prokarin was really helping her as well.
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Is your wife online at all? Does she have lots of on or offline support?
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Marg used to spend some limited time on the computer but last year she suffered a severe infection in her leg (after getting a small innocent scratch) and that (according to educated guesses by the docs) increased old damage to her optic nerves and a fair amount of lost use of her right hand. Her sight has suffered as a result and she has lost at lot of fine motor movement in the fingers. That makes using the computer almost impossible at this time.
Often I will pose questions to her that readers might ask me on the net. I use her answers to help me reply to these people. Fortunately her cognitive function is still good. On the bad side of that and being a nurse, she knows and sees exactly what is happening to her and that is VERY frustrating for Marg.
Take care.
Harry