POZ Community Forums
Main Forums => Living With HIV => Topic started by: minismom on November 04, 2013, 03:34:23 pm
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At our neurology appointment last Thursday, we finally got a diagnosis and, with it, answers. She has neuroparhy in her hands and arms and a condition called dystropia in her legs. Neuro wanted to start her on a low-dose Parkinson's med to combat the dystropia, but we are holding off until her PID appointment Friday. We were *warned* that both the neuropathy and the dystropia will eventually effect more of her body and, essentially, she will end up with both conditions in all her limbs.
Like everything else, we'll deal with the eventualities when they come. For now we're working on helping Mim figure out life with her new "normal".
Hopefully, soon, she will be able to share her experiences with all of you herself. Until then, you're stuck with me. :o
Mum
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Is it possible that you mean "dystonia"?
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Oh, good grief! Yes, dystonia. Not sure where my head is :o. According to my good friend, dystonia seems to "respond remarkably well to alcohol"
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Oh, good grief! Yes, dystonia. Not sure where my head is :o. According to my good friend, dystonia seems to "respond remarkably well to alcohol"
Hm. I might change my name.
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Hey you!
It must be a relief to know what is going on! I see you are still an amazing Mom. Hope you and the whole gang are all doing well!
Snow
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All these years later we finally have some insight! I'm glad you've kept at those providers and your perseverance has given us all insight as well. I often tell the story of Mim surprising us all and climbing the world's third-largest pyramid. I treasure the portrait of me and her piggyback, and would love to retake that picture. But given the changes with us both (she's grown up and I'm a teensy bit older/feebler) she will probably have to stand on a chair and kneel a little to make it look the same ;)
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Snow, sweetie, so glad to hear from you! How's the family? I miss you!
Uncle Creighton, she could probably give you a piggy back ride! As of yesterday, she is 132.4 pounds! So much for wasting. We have a framed copy of that picture on our mantle - it always makes me smile.
Doc agrees with hubby and me - we're holding off on the muscle relaxers unless, and until, it either ges worse or more frequent. Sometimes her legs will tingle before the muscles freeze so she has time to either sit down or grab ahold of something. When there's no warning, she falls. When we're out and somewhere there will be lots of walking, she uses her wheel chair.
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Hi Mum,
I know it's a relief to finally know what's going on. Please give Mim a big kiss from me and Poppy. I think of you guys often. :-* Please take care of all of you, I know you will.
Betty