I know it's really hard to exercise when you can't walk properly - I can relate! Swimming is good. I've no excuse not to get back into that now its getting warmer, and i can drive to the gym instead of a 45 min scoot each way. Glad you're "stable", but hope you can get there with improving your symptoms one day soon. Amanda.
@missalgernon Thanks! Well, autumn is coming, and that will help me get out more. I am so sensitive to the slightest heat that I am actually starting to look forward to freezing temps!
@sandyCanada56 I should have said 'brain' instead of 'vein' in my other comments! Sheesh! Anyway, I'm still looking into it. :) Always open to listen to info other people find, too. :)
@sandyCanada56 Thanks. Yes, she's wonderful. Well, I do hate the idea of having a stent in my vein. I also hate the idea of my vein being closed off and pushing blood back up into my vein. ;) Of course, this is all assuming that I have CCSVI.
It is great to have a doctor that listens and wants you to paticipate in your own health choices! Nice to know that the doctors there are looking into CCSVI and I wish you much luck! Stents are the big debate right now, not everyone needs one. If the vein stays open. But if if the close up then you may need one. Or just have the angio again. As far as excercise, I know what you mean. I have put on weight since I can't really do anything either!
@MSVlogSupport Yes, it's wonderful having a doctor that listens. It's doubly hard because she mostly treats Japanese patients, and she speaks Japanese and Chinese all day. Suddenly, in I walk, with my English, and completely different culture.
It is unusual in China for people to investigate your condition and be involved in decisions. Maybe that's changing a little with the Internet, but not so much. It says a lot that she's not threatened by new knowledge. She's very smart/competent!
At least she listens to you! After failing Tysabri and others my choices are limited and my doc would not go near ccsvi or LDN, but instead wanted to keep up the Tysabri with Benadryl....... even with high level liver tests....I want to know what is considered to high???
@ThePennygirl Yes, she definitely listens! I'm not sure what is considered too high. The range for women tops out at below 40, and for men it's around 60. Mine's at 55, which the doctor said was 'normal for a man'. The point is that it's not dangerous (it's functioning), and it's probably not the Rebif (or not the Rebif alone) that's causing it.
The CCSVI is up to me, I guess. I don't really need a referral or anything because I'd just pay for it myself. But I like to keep the neuro in the loop
I know it's really hard to exercise when you can't walk properly - I can relate! Swimming is good. I've no excuse not to get back into that now its getting warmer, and i can drive to the gym instead of a 45 min scoot each way. Glad you're "stable", but hope you can get there with improving your symptoms one day soon. Amanda.
missalgernon 1 year ago
@missalgernon Thanks! Well, autumn is coming, and that will help me get out more. I am so sensitive to the slightest heat that I am actually starting to look forward to freezing temps!
haiqin 1 year ago
@sandyCanada56 I should have said 'brain' instead of 'vein' in my other comments! Sheesh! Anyway, I'm still looking into it. :) Always open to listen to info other people find, too. :)
haiqin 1 year ago
@sandyCanada56 Thanks. Yes, she's wonderful. Well, I do hate the idea of having a stent in my vein. I also hate the idea of my vein being closed off and pushing blood back up into my vein. ;) Of course, this is all assuming that I have CCSVI.
haiqin 1 year ago
It is great to have a doctor that listens and wants you to paticipate in your own health choices! Nice to know that the doctors there are looking into CCSVI and I wish you much luck! Stents are the big debate right now, not everyone needs one. If the vein stays open. But if if the close up then you may need one. Or just have the angio again. As far as excercise, I know what you mean. I have put on weight since I can't really do anything either!
MSVlogSupport 1 year ago
@MSVlogSupport Yes, it's wonderful having a doctor that listens. It's doubly hard because she mostly treats Japanese patients, and she speaks Japanese and Chinese all day. Suddenly, in I walk, with my English, and completely different culture.
It is unusual in China for people to investigate your condition and be involved in decisions. Maybe that's changing a little with the Internet, but not so much. It says a lot that she's not threatened by new knowledge. She's very smart/competent!
haiqin 1 year ago
At least she listens to you! After failing Tysabri and others my choices are limited and my doc would not go near ccsvi or LDN, but instead wanted to keep up the Tysabri with Benadryl....... even with high level liver tests....I want to know what is considered to high???
Any way hang in there and all the best :)
ThePennygirl 1 year ago
@ThePennygirl Yes, she definitely listens! I'm not sure what is considered too high. The range for women tops out at below 40, and for men it's around 60. Mine's at 55, which the doctor said was 'normal for a man'. The point is that it's not dangerous (it's functioning), and it's probably not the Rebif (or not the Rebif alone) that's causing it.
The CCSVI is up to me, I guess. I don't really need a referral or anything because I'd just pay for it myself. But I like to keep the neuro in the loop
haiqin 1 year ago