Whatever it is, it’s getting worse … :-(
AnonymousJuly 6, 2011 at 3:20 pm
… and I guess it’s time to do something about it.
my story, briefly (sort of), since this is a first post.
i was diagnosed w/ sensory motor polyneuropathy with the possibility of CIDP about 10 years ago and it’s been pretty stable all that time. Just very numb toes and pretty number feet, with consequent loss of balance. i took up stand-up paddle board surfing four years ago. it took me two of those years to even be able to balance on the board. now i can ride waves pretty well, and i was even starting to be able to walk the board toward the nose, with hanging ten not too far off.
but in the past month, my polyneur has gotten suddenly worse and it’s really messing up my surfing (and my life). my right foot in particular has started to drop, while the right toe has kind of frozen itself in position and i can’t really move it at all. plus, i didn’t notice it over the winter, but my leg muscles have atrophied to a nearly frightening degree Plus, my left knee joint is feeling ‘lose’ and the kneecap itself is beginning to feel somewhat fuzzy. And, while my ankles have felt like rolling for years, i never actually rolled one until a month ago, in the surf, tiny waves, and now it feels like it’s going to reroll all the time, so i’ve started to wear a brace both in the water and out.
My current neurologist has never felt the need for me to get a lumbar puncture and look for CIDP, so that we can take action if possible. I really don’t know why. Even when I saw him a few weeks ago, he was pretty laize faire about the whole thing.
So, mid-July, I’m going to see Russell Chin at the Per. Neur. Center in NYC and see what he says. I’m thinking I really ought to get started to see if a cause can be found. Meanwhile, I’m continuing to surf and to ride my bike, trying to build some muscle back up. Anything else I could be doing or should not do to try to help myself? Thanks much.
AnonymousJuly 6, 2011 at 9:00 pm
thanks for the response. as to the futility of exercise before arresting the condition, yes, i see your point; at the same time, wouldn’t exercise strengthen what muscle is still there? in any event, i’m going to keep it up, if for no reason other than it makes me feel good and like i’m doing something to fight the decline.
AnonymousJuly 6, 2011 at 9:59 pm
BUT it must be done with caution. First off, once you have this stuff, you cannot go GUNG HO and think that exercising will get you back to normal. You’ll have to go slower and steadier with CIDP and be a tortoise, not a rabbit. IF you do too much at one time? You’ll set yourself back three steps for each one gained.
If you can find a really good [non-gung-ho] physical therapist? One who has the patience to teach you some home program exercises that can be done safely and do those in not all in one hour? But say, ten minutes every other hour? I bet you’d make progress better, safer and faster. Your body has attacked part of itself and it’s functioning. Be cautious and careful when working to get back in shape. Should you get PT orders from your docs? Be sure that they note on the prescription/orders that aid for a home program should/must be included. A lot of exercises that strengthen can be done easily sitting in a chair watching TV, and the others are easily done where you’ve got a safe place to hold on for stability to do the rest.
My greatest fear about agressive therapists? Is that they wear me out to the point I’m not functioning safely to drive home alone.
The Mayo Clinic has some physical therapy features on their site as do others. Most basic ‘equipment’ can easily be bought for less than $50. and max out at $100. Therabands, hand weights, balance discs, bosu balls can easily be found at the “Marts” and on other sites such as Netfitco. I only buy on sale. So keep your eyes open for those. I hope this helps? Just remember GO SLOW? It’s safer and gets you more achievments in the long run.
PS I’ve had my CIDP for over 8 years now, and a relapse or whatever set me back badly about 2 years ago. I almost feel about ready to go and do! Now.
AnonymousJuly 8, 2011 at 5:20 pm
yes, mine has been a slowly progressive case; although the diagnosis came much later, i first felt the numbness some 20 years ago. but things do seem to be speeding up …
as to PT, what i do now, bike riding and surfing, seems kind of plenty. i may not have helped me but i don’t think it’s hurt me (i hope). i’ll now more in a week or two, when i go see dr. chin.
will report back.
AnonymousJuly 21, 2011 at 8:05 am
had my visit with the new neurologist. he took a look at my emg from six years ago and said if he had seen that test then, he would have diagnosed me w/ cidp and started treatment, instead of doing what my doctor did, which was nothing, so that now i’m starting off considerably worse than i was 6 years ago. sigh.
that said, he wants to do another emg, and do this one himself, to confirm his suspicions. we shall see …
he also said the surfing and bicycling i do is perfectly fine. whew!
AnonymousOctober 22, 2011 at 11:07 pm
Let me know how your treatments go. It sounds like you have had a similar progression to me. Just a little numbness in the beginning, slow progression, then a more rapid period.
That part happened for me between 1989 and 2000. I may be able to shed some light on the next 10 years, if your progression is similar to mine.
Let me know how much you want to share.
You must be logged in to reply to this topic.