a BIG HELLO to all my Rituxan friends and forum friends!!
I’ve been absent from the Forum since May 6th…and a lot has happened.
On the personal side, I’ve been traveling through USA, Eastern Canada, Australia, NZ and France transferring my accounts to my replacement. I retired on June 20 with my last day in Lyon France. Marian and I then toured around Southern France for a couple of weeks, then home and lots of chores with the cottage, etc. Marian took my mother to England but she wanted to come home a month early, so we had to make all those arrangements at the same time. Life has been busy, but I love retirement so far.
I’ve tried to catch up a bit on the postings. How is Dell doing Lori? I read that he is walking with a cane. I hope he continues to improve.
I was sorry to hear of your increase in anti-MAG, Norb. That was really shocking news because it means that we are missing something in our understanding of the treatment mechanism. Your explanations of what might be happening seem quite plausible.
What it also says is that the conclusions I reached in my paper to the doctor were not valid. Interestingly, as you may recall at that time, she told me that the anti-MAG levels and Rituxan treatment were not related. She did not elaborate and her statement has been bothering me ever since. Does the medical community (and drug companies) know something that has not been published? After all, any negative results would not serve well in getting the drug approved.
Last Thursday, I had my third maintenance Rituxan treatment. This time with no solumedrol and it went really well. I have the usual mild stomach cramping for the last couple of days but that should soon go away.
I feel that my numbness has improved. There is almost no numbness in my fingers now and I can walk practically normally. I am trying to do some short distance running in order to rebuild some strength in my ankles. I noticed that I can hardly walk down stairs in the morning and the ankles tighten up with inactivity. So I need to stretch them and strengthen them.
Allaug, you once mentioned that you had no increased susceptibility to infections since taking Rituxan. I have gone for many months without a cold or infection and I wanted to say that I totally agree with you. I thought that the elimination of B cells would affect our immuno defense, but in my mind that has not really been the case. The only question I have right now is that a recent blood test (before Rituxan) showed an elevated ESR which is a measure of the amount of inflammation in the body. Does that mean that the myelin is still being attacked?
My next appointment with the neurologist is late October. I guess I won’t have any news before that.
On a positive note, I attended the GBS/CIDP hike at the Kortwright centre in late May. Turnout was excellent and we had a fantastic day. Kudos to the organizers for such a super event.
It’s nice to be back
Had to play hooky from school a day last week due to over doing it. It wasn’t from exercise, we were working on the house and even after almost 2 1/2 years I still need a wake up call about how I can’t do the same stuff I used to.
I’ve decided to prioritize my activities. Real exercise, as in the movements I did during therapy, have to come befor daily exercise, such as cleaning, daily chores etc. If I get the stretching, balance, strength and endurance stuff done first then I may be more motivated for the daily drudgery.
Yesterday I started on the floor with leg lifts, all 4 sides. I never tire of the modified exercise ball, lots of stretching and holding with that. Two lb. dumb bells for the arms, and finishing with a little yoga. I plan to work my way back to the treadmill.
It’s because I am continually drawn back to this site, forced myself to re-start. I’ll be back on the floor after early morning church.
Thanks to everybody for checking in here and keeping us motivated.
SNEVETS82, how do you do it?
Keep on keepin’ on
Our forum was down and it caused us to lose some of the posts. My full name is Elizabeth Nesnick, so when you arrive at Embassy Suites, you’ll need to ask what room I am in. I will tell them that we are sharing and I will give them your name. Am I right that it is Sonja Jeldstrom??? Please post again what time you will be getting there, and if I am not attending a workshop, I will meet you in lobby. You can email me for a little chat if you’d rather do that.
I’ll be here with my post. So, the first official race will be the Coca-Cola 600 at Lowe’s Motor Speedway, May 28th (Sunday) and our picks must be posted by 9:00 AM the day of the race.
Prior to the race we need to set the Segment rules. There have been 11 races already completed. There are 15 races remaining until the Championship Chase begins. We could have Segment 1 for those 15 races, scoring only the best 10 scores. Then with the Chase (final 10) we could have Segment 2, starting with new scores for that segment, and scoring the best 5 scores. This way we will have a Segment 1 winner, a Segment 2 winner, and a Overall winner.
As Dick stated earlier, there would be 15 picks. The picks can be made from the field at [url]www.nascar.com[/url] There will be an 11/7/5 point system (exact pick, one spot, and two spot) and an additional 10 point bonus if the winner is picked.
If anyone needs help picking drivers, go to [url]www.nascar.com[/url] and click on races for past results, schedule, etc., or click on drivers for crew chiefs, driver vs driver at different race tracks etc., etc., etc.
And…if you want to play, make sure you post your 15 drivers by 9:00 AM Sunday, May 28th.
Dave, didn’t mean to cut in on your post…just came natural after doing it for 2 years. Glad you started the thread and so many joined up!
Dick, do you want to keep score, or do you want me to keep it?