Quote:
Originally Posted by inspirations
Susanne, I am so sorry to hear this. It sounds as though your progression is far worse than mine since you probably developed it early on. For now, my med--Gabapentin--is keeping it under control. I just wonder if the process, for me, will be slow as well. I have no ankle reflexes, and I'm having trouble knowing where my feet are since I'm sometimes unstable.
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I have the same trouble knowing where where my feet are, it is very difficult to stand up when I have been sitting. I am also on gabapentin, it helps with the burning and zaps, but not the deep bone / muscle pain, I have MS Contin and oxycodone for that or I would be on the sofa all day. I function pretty well, walk with a cane, two if outdoors, but I get so tired by the evening.
I was about 46 when my symptoms started to really affect my life, I am 51 now. The past five years have been a series of setbacks and losses, but I am thankful that my children are nearly all grown, only one is 14, the rest are able to take care of themselves and they all help out. Anyone going though this with young children is suffering far more than me.
Gabapentin only helps with symptoms, it will not slow the disease process. If yours is hereditary, and your symptoms sound too familiar, nothing will do that. What blood tests are they planning to do? Are they doing any genetic testing?
Good luck!
Susanne