6 months after Campath
Posted: Wed Sep 24, 2008 6:23 pm
Today was me & Jessica's 6 month check up. I scored 100% on the PASAT math test, and my vision is still awesome at 20/20 & 20/15.
This is the same as before Campath.
For the other neuro/reflexes, walking, and balance tests, I also scored about the same as before, my EDSS is 2.5
My left side is definately weaker as it always has been.
The EDSS might end up a little higher because I told the truth about a bladder issue (was in denial) and recently developed a new sympton: l'hermitte's.
Despite this annoying L'hermitte's, I'll have to admit I'm probably not any worse. It's been nice not having to take any other MS meds (besides a ton of vitamins!)
Side effects from Campath continue to be frequent respiratory problems--Right now I have a nasty cough that has been lingering for 1 month. It did not respond to 1 round of antibiotics. It might be viral. about 3 weeks prior I sought treatment for a sore throat and every month before that was some kind of cold and even pneumonia.
I just re-did the Immunocap (IgE blood-allergy) Test. I've never had allergies, did this test 3 months before Campath and it was all negative.
(I work in healthcare and have easy access to lab-tests. I'm conducting my own research!) It will be interesting to see if I have any new allergies post-Campath.
It seems I have had some sort of cold since @ one month post-infusion.
My platelets never dropped (campath has risk of ITP) Jessica's got on the low side month 5 but was not critical (@180 i believe)
My lymphocyte count went from 0 (day 4 of infusion i think) and steadily & slowly rose month to month, where at month 5 i was back to "normal" (low but in range) at 16. Jessica's lymphocytes were normal (low) at month 4.
I've been a little discouraged that my walking isn't any better; Deep inside I know I need to get more exercise via Yoga & Bike Riding to regain strength. I'm also looking hard into my diet and know I ought to try harder there....So there's hope! When asked by my NursePractioner if I was going to accept the second treatment, I couldn't promise anything but I'm not dropping out yet! She is awesome and has been very supportive.
I still say stem cells should follow this treatment. Some of the studies out now state disqualification if the patient has tried prior "immune system ablation" I assume campath is in this category. That's my main concern and advice to think about before joining.
Still, No regrets! Thanks for listening....
This is the same as before Campath.
For the other neuro/reflexes, walking, and balance tests, I also scored about the same as before, my EDSS is 2.5
My left side is definately weaker as it always has been.
The EDSS might end up a little higher because I told the truth about a bladder issue (was in denial) and recently developed a new sympton: l'hermitte's.
Despite this annoying L'hermitte's, I'll have to admit I'm probably not any worse. It's been nice not having to take any other MS meds (besides a ton of vitamins!)
Side effects from Campath continue to be frequent respiratory problems--Right now I have a nasty cough that has been lingering for 1 month. It did not respond to 1 round of antibiotics. It might be viral. about 3 weeks prior I sought treatment for a sore throat and every month before that was some kind of cold and even pneumonia.
I just re-did the Immunocap (IgE blood-allergy) Test. I've never had allergies, did this test 3 months before Campath and it was all negative.
(I work in healthcare and have easy access to lab-tests. I'm conducting my own research!) It will be interesting to see if I have any new allergies post-Campath.
It seems I have had some sort of cold since @ one month post-infusion.
My platelets never dropped (campath has risk of ITP) Jessica's got on the low side month 5 but was not critical (@180 i believe)
My lymphocyte count went from 0 (day 4 of infusion i think) and steadily & slowly rose month to month, where at month 5 i was back to "normal" (low but in range) at 16. Jessica's lymphocytes were normal (low) at month 4.
I've been a little discouraged that my walking isn't any better; Deep inside I know I need to get more exercise via Yoga & Bike Riding to regain strength. I'm also looking hard into my diet and know I ought to try harder there....So there's hope! When asked by my NursePractioner if I was going to accept the second treatment, I couldn't promise anything but I'm not dropping out yet! She is awesome and has been very supportive.
I still say stem cells should follow this treatment. Some of the studies out now state disqualification if the patient has tried prior "immune system ablation" I assume campath is in this category. That's my main concern and advice to think about before joining.
Still, No regrets! Thanks for listening....