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Old 08-26-2008, 06:49 AM #1
daniella daniella is offline
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daniella daniella is offline
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A few thoughts from what I read here. That some people feel better because they find a treatment that works for them. For ex the right med. I think it is Dan but he tells a great story though I know he still suffers but how he found the fetnyl patch and it gave him a better quality of life.
I am a little different then most here though many of us are but anyhow a lot has happened with my health and symptoms from the start of this. Some has gotten better and then new things have appeared. I tend to worry so much about what else can happen or what may get worse like you said about walking etc. I am really working and this is easier said then done but staying in the present and getting through each day in the best I can. To be as proactive in life and my health. When I have my surgery I am going to do biofeedback again which I think everyone could benefit from. It is really hard not to worry but I do feel for me all the anxiety and fear really takes away from the quality of life and in some ways I may have to accept certain things for the next 50 or 60 years. Oy. Hang in there and I hope you feel better
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Leslie (08-27-2008)
Old 08-26-2008, 08:59 PM #2
dahlek dahlek is offline
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dahlek dahlek is offline
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Default How PN progresses? For each of

us it is very very different! Even the most experienced of neuros can't have experienced all the neuro categories listed in this key sticky site's index:
http://neuromuscular.wustl.edu/alfindex.htm
Read it at your leisure and turn your brain into peanut butter!
Some neuropathies come on slowly and take decades to get diagnosed, others come on rapidly [my own did] and even then it took a heap of effort and over a year to get diagnosed...and I KNOW I was very very lucky!
Sometimes, for a few folks, things just go away. For others they get sicker and die. For the rest of us, we simply have to make the best of what resources are available to help us...be they meds, doctors, therapies, supplements or whatevers to get by.
Yes the first, foremost and greatest fear is IF things seem to be getting worse! I am not shy about calling my neuro when I'm sure such things are happening! I call 3 times a day until I either get an appt. or an answer from him! But then, I've been working with my neuro for over 4 years and he knows I'm not going to say 'the sky is falling!' unless something is really off kilter. Like you, I play/replay all what has happened to me before and after my onset and now, what might be logical in terms of 'setting' off new symptoms. That way the doc and I don't have to tip-toe around during the office visit and get down to business.
I HAVE had some areas of progress, and some set-backs. But I know what is helping the progress and what is causing those pesky/scary set-backs.
Understanding and learning as much as a non-technical person can about what happens to those nerves dying and re-growing is useful [to me, at least] when coping with any of those set-backs.
I wish I could say that at times the 'status quo' is a good thing? But, truly it is! The pains or numbness may change, but it's going to be there in various ways. Sometimes you won't notice any of these changes, they are usually subtle...but the good ones can and DO HAPPEN! I hope truly that this helps ease your fears to a degree. Hugs and hope! - j
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