Welcome back Jeff, I haven’t posted with you since diag+2months for me.
We’ll I did go back to work and though I walked very slowing around the office I survived. The next month after going back I was advised to go back to the gym and practise Tai Chi. That was challenging given all the balance required. Now 17 months post diag. I’m doing all I did before, I still have tingling in the feet which surges and recedes based on rest.
It’s nice to her of your progress, walking 20 minutes.
Talk to you later,
Mark, still in New York.
:rolleyes: I’ve been a crank this past week, and it had little to do with gbs/cidp.. I had to watch the Minnesota Twins drop 3 games to the Yankees….:D I hope the Mayo can help you get on track.. Obviously, something is going on, and hope you don’t become a financial wreck trying to find out.. Hope things start going good for you…:)
It is nice to see another post from you & also to learn that you have gained a lot of insight by reading many of our posts. I have/had a very severe case of CIDP which came on rather suddenly. One weekend I was snowmobiling & a few weeks later I was totally unable to walk & had no trunk muscles, no arm strength, & almost no use of my hands. When 8 months of IVIG, PP, & steroids failed to arrest my CIDP I was finally put on 8 months of chemotherapy. I mention this as I just remebered that after my cytoxan infusions, my feet & lower legs would feel like “frozen turkeys.” It was really scary to me as I thought that the infusions were making me even worse.
That was back in March of 2002 that I came down with CIDP; by the summer of 2004 I had enough back to begin walking again. By that fall I was walking with AFOs & a cane. Not much better today, but a lot better than I first was!
It is so wonderful to see you posting again, & I am so glad that you were able to find what works best for you in terms of treatments. I always did wonder why IVIG had to be stopped when it had worked for you in the beginning of your illness. I know there was a reason at the time, but I can’t seem to remember it now. But since IVIG is working so well for you now, that must mean that you have the relapsing/remitting form of CIDP which I think is good. That is why you were able to get back so much function.
Wow, a normal gate, how unbelievable, I am happy just to be upright. CONGRATS on your permit, I used to teach drivers ed & always thought that the permit test was harder than the actual driving test. This last time when I had to retest, they didn’t even seem to notice that I drove with both feet! That will be your next step, & your ticket to more freedom. In the meantime, I would strongly recommend water aerobics, or some sort of working out at a gym. I go twice a week & feel it is so good for range of motion in all of my body parts. I have also met a lot of nice women as a bonus.
Look to your passions to get your life back. I have finally been able to take up my love of reading again. My husband & I have also been doing a lot of snowmobiling again since we finally got snow here in MN. I can’t wait for summer to spend lots of time at our lake cabin & cruise in the boat. My point is that life will never be what it once was, or could have been, but it can still be very very good.
Hi everyone, it is very nice to be back. I used to check up daily about this site but in vain. Yesterday I got this and not only glad but gained some energy again to live with ‘Family’
Well said Jan. I do agree with you.
Hope everybody is well during the missing period.
Hi family and friends,
BOY, I’m going to have to re-learn how to use this. I already noticed the time that I have showing is wrong. I put in a profile, but I have to figure out what else I need to do.
I couldn’t get my old status back, even though I had my username and password. I had to register as a new member, but that’s okay.
We’ll just have to send out word to everyone and anybody we know that the US forum is back.
WELCOME BACK EVERYONE,
from my heart,