I won't go on the one that is coming out this year bc I heard there are risks, like cancer. I already have my hands full with MS. There are a couple just starting trial 3 and they should be better, but available in 3 yrs.
I found it a lot more difficult to take showers before starting Tysabri. I was barely standing on my feet before and had a couple very bad falls. Have you tried to take showers in colder water or baths? I find it easier now to shave my legs sitting on the side of the tub.
The drug sudty I am in is for one of the new oral meds and is a phase 3 study. I don't think it will be out for about 3 years One of the reasons I am trying to stick it out with the Avonex is that after the 2 years I will be able to have the real pill for 1 year as a follow up study.
Not having inruance has made my choices difficult.
1) I'll take whatever the NHS prescribes; 2) My hygiene was always terrible anyway; 3) Lots of greens and fibre, with no red meat; 4) I really have no idea, sorry! T x
@MSVlogSupport - me ppms and just started on LDN 1ml 1st x week 1.5ml 2nd week 2ml 3rd week plus vit d, magnesium, omega. hygiene body wash at the basin. LDN read the web and speak to your health care person. good luck
My neuro thought something (dmd) was better than nothing. I beg to differ. I stopped having relapses for a few years but had significant progression. However I had two relapses withing 3 weeks of each other this fall. Before MS I never had a conversation about my hygiene. MS just tosses pride right out the window. I take an Omega 3 supplement, Calcium with D. I use to also take evening primrose oil and flax seed oil caps. But I can't afford it all anymore.
The cost of everything is so expensive. Eating health can make you go bankrupt.
The progression thing is what I am really wondering about. Someone told be that if I were moving into SPMS that my mri's would not show new lesions but I would just be getting worse.
Not sure if I expanied it right, but since I don't know if I have new lesions on my spine or if they are just flaring up and not a real relapse.
I think I mistyped. I don't style my hair I can't wear makeup anymore because I can't see well enough. I felt better when I followed the swank diet. I am tryin to get back to that now =trying. I was on Copaxone and Rebif. Those were not effective and I could no longer afford a DMD my copay was $1002 a month. My neuro put me on Avenex because I got it for free from the Access program. I am secondary progressive with relapses too be cont.
3. I do follow a very healthy veg. diet. I think it helps because when I go off and eat junk food, I feel worse MS wise. No special "MS diet" though.
4. I don't know anything about it except that I think once you have no more active relapses and your MRI's do not show any active lesions for a period of time, that is the criteria for some doctors. Also I think the DMD are not approved for secondary progressive because studies show little value in them.
1. no to the oral med until I see a lot of results. The reason is that I'm on Copaxone with very few side effects, a tiny bit of swelling and itching sometimes and a rare IPIR. It's good for me, I've improved on it.
2. no. It's kind of stupid but even when I'm at my worst I would take a shower and be wiped out the rest of the day. I don't know why!
1. Yes to the oral med. I am 12 months into a trial of an oral med and I GUESS I'm stable.
2. I try but if I don't have to go anywhere I don't fuss. AND the showers can tire you out.
3. More fruit & veg less fatty, processed food. Omega 3 supplement. Vitamin D
4. Think I'm stable with maybe some improvement? The EDSS, MSFC & MRI's show things as well as you noting different things day to day. I diarise things, I have a pedometer to measure distances walked etc.
Andrea at this point I am willing to try a new med doesn't matter if it is pill form, iv, or injectible. Avenex is not working for me. But really I guess my health insurance company has that ultimate power over me soooo who knows. As far a hygiene no I sure am not little miz priss like I use to be. I shower nearly every day unless I am really sick. I do not wash my hair everyday. I rarely go more than two days without washing my hair. I do not style my hair. I can not see to apply makeup.
Well you are ahead of me LOL, I only do hair and makeup for vidoes or if I am going out. Have you talked to your doctor about any of the other drugs like Copaxone? Is was the easiest one for me, not side effect except some lumps and bumps at the injection site.
I am currently taking LDN. I've been on it seven months. I stopped it after going off Tysabri (was on it for 20 doses). It has helped my fatigue, it has increased my strength and I have more endurance. I would recommend it to every MS patient, but I would warn people that it's not a monotherapy; Diet needs to be changed, too. People with MS should stay away from gluten, dairy, soy and sugar.
I could write a book about my experiences, Andrea! lol Thanks for doing this video!!
You can have meat, fish and vegetables. I eat fruits such as blueberries, raspberries. I cook gluten-free muffins that I eat for breakfast. Basically you need to stay away from breads, pastas and fried foods. I've been eating this way for more than two years and I've lost around 150 lbs. The first couple of weeks were hard (detoxing), but afterwards it was easy. I feel so much better cokking my own meals (or husband cooking) than going out to a restaurant. As far as dairy, replace w/almond milk.
I have a great curry chicken recipe I fix almost weekly (per hubby's request). It has coconut milk, all the spices, chicken, peas, and carrots. I put it over brown rice. Yummy!!
I know I have to prioritize my day. I do what I have to do, and what's left is put off for another time. Usually that means showering, shaving, etc. I have found that a shower chair helps me with the fatigue and vertigo.
Incontinence is so embarrassing! I've had accidents, too. I would suggest scheduling bathroom visits every 3-4 hours, even if you think you don't need to go. Another tip is to practice Kegel exercises. This helps condition the muscles of the bladder.
Hi. My husband has relapse/remitting MS and takes the weekly Avonex shot. As I type this, I was going to ask what shot you take and how often? But you just said Avonex, lol. Do you take Ibuprofen before the shots? I'm looking to understand what he goes through w/the MS and am constantly forgetting he has MS because you can't really tell he has it. I really enjoy watching your vids. Thx for making them.
My husband takes 3 ibuprofens before the shot, and then more after about 5 hours of taking the first dose. He doesn't get involved, but really should. He and I go to MS conferences given by MS Active Source. We tried getting involved in a support group, but they don't meet regularly and because they met at night on a weeknight and at the time we started going, he couldn't attend because of work schedule conflicts. He just kind of "deals" with it on his own w/my help.
Dear Andrea, you do know me a little by now, right?
People will have to force me to take another drug so no, I won't take the new pills if I don't have to and if I can avoid it. I won't take Tysabri forever and I hope that I can have a better choice with Zamboni's discovery! I don't care as much about the way I look, not as much as I used to. I do pay attention to what I eat and follow certain rules but not all of them. Thank YOU for doing this. I might make a video if I feel better tomorrow.
I so hope that Avonex will stop making you sick and that it will start helping you!
That medicine didnt work for me at all and so didn't the other 3 that I have tried so I am not easy to convince when it's about taking drugs! I am not sure how doctors can tell that we are progressing without seing the typical signs of more lesions or disability that slowly happens with time. I do think that they want people to take medicine anyway. You look very beautiful too and keep on smiling :)
More questions, YAY! i love answering questions.. (u can imagine what i was like in school :P ) i will make a vid 2moro, even though i dont take tysabri, I will answer them to my best with my current position with MS.. thanx..
Omario you crack me up. You must have been much better in school than I was.
The question wasn't just for those on Tysarbi and I aminterested in all the meds people take. Was just curious about the people on Tysbari due to the risk of PML.
Just looking at you I know that you take a shower every day LMAO!!
u will find out about my shower situation when i get to make my vid.. and i dont take a shower to look GOOD!! :D that comes naturally.. LMAO im joking.. he he i would do a video now but everyones asleep and its 3:13am,
God bless you. Really.
Alexknobsob 2 years ago
Hi Andrea. I posted a vid response. When it finally comes thru, I apologize for the video/audio delay! I don't know what the problem was.
Thanks
Sandy
sandywatts500 2 years ago
Hi Andrea;
I posted a video response, but I cannot link it here right now (I think YouTube is having issues tonight).
vbeachy 2 years ago
I won't go on the one that is coming out this year bc I heard there are risks, like cancer. I already have my hands full with MS. There are a couple just starting trial 3 and they should be better, but available in 3 yrs.
I found it a lot more difficult to take showers before starting Tysabri. I was barely standing on my feet before and had a couple very bad falls. Have you tried to take showers in colder water or baths? I find it easier now to shave my legs sitting on the side of the tub.
WithCourage2008 2 years ago
The drug sudty I am in is for one of the new oral meds and is a phase 3 study. I don't think it will be out for about 3 years One of the reasons I am trying to stick it out with the Avonex is that after the 2 years I will be able to have the real pill for 1 year as a follow up study.
Not having inruance has made my choices difficult.
MSVlogSupport 2 years ago
Hopefully, Obama's Health Insurance Reform will help you!! :)
WithCourage2008 2 years ago
1) I'll take whatever the NHS prescribes; 2) My hygiene was always terrible anyway; 3) Lots of greens and fibre, with no red meat; 4) I really have no idea, sorry! T x
lovingfatalist 2 years ago
The no red meat is what would be so hard for me. I love me some beef!
MSVlogSupport 2 years ago
@MSVlogSupport - me ppms and just started on LDN 1ml 1st x week 1.5ml 2nd week 2ml 3rd week plus vit d, magnesium, omega. hygiene body wash at the basin. LDN read the web and speak to your health care person. good luck
2010ironside 1 year ago
My neuro thought something (dmd) was better than nothing. I beg to differ. I stopped having relapses for a few years but had significant progression. However I had two relapses withing 3 weeks of each other this fall. Before MS I never had a conversation about my hygiene. MS just tosses pride right out the window. I take an Omega 3 supplement, Calcium with D. I use to also take evening primrose oil and flax seed oil caps. But I can't afford it all anymore.
Sage95351 2 years ago
The cost of everything is so expensive. Eating health can make you go bankrupt.
The progression thing is what I am really wondering about. Someone told be that if I were moving into SPMS that my mri's would not show new lesions but I would just be getting worse.
Not sure if I expanied it right, but since I don't know if I have new lesions on my spine or if they are just flaring up and not a real relapse.
Plus no improvement since the relapse.
MSVlogSupport 2 years ago
I think I mistyped. I don't style my hair I can't wear makeup anymore because I can't see well enough. I felt better when I followed the swank diet. I am tryin to get back to that now =trying. I was on Copaxone and Rebif. Those were not effective and I could no longer afford a DMD my copay was $1002 a month. My neuro put me on Avenex because I got it for free from the Access program. I am secondary progressive with relapses too be cont.
Sage95351 2 years ago
Thanks for the vlog Andrea! I have to split my excessively long comment up.
floydini13 2 years ago
Get a WEBCAM!!! LOL
MSVlogSupport 2 years ago
3. I do follow a very healthy veg. diet. I think it helps because when I go off and eat junk food, I feel worse MS wise. No special "MS diet" though.
4. I don't know anything about it except that I think once you have no more active relapses and your MRI's do not show any active lesions for a period of time, that is the criteria for some doctors. Also I think the DMD are not approved for secondary progressive because studies show little value in them.
floydini13 2 years ago
Hi Andrea.
1. no to the oral med until I see a lot of results. The reason is that I'm on Copaxone with very few side effects, a tiny bit of swelling and itching sometimes and a rare IPIR. It's good for me, I've improved on it.
2. no. It's kind of stupid but even when I'm at my worst I would take a shower and be wiped out the rest of the day. I don't know why!
floydini13 2 years ago
Hi Andrea
1. Yes to the oral med. I am 12 months into a trial of an oral med and I GUESS I'm stable.
2. I try but if I don't have to go anywhere I don't fuss. AND the showers can tire you out.
3. More fruit & veg less fatty, processed food. Omega 3 supplement. Vitamin D
4. Think I'm stable with maybe some improvement? The EDSS, MSFC & MRI's show things as well as you noting different things day to day. I diarise things, I have a pedometer to measure distances walked etc.
That's my story!
andie221 2 years ago
Andrea at this point I am willing to try a new med doesn't matter if it is pill form, iv, or injectible. Avenex is not working for me. But really I guess my health insurance company has that ultimate power over me soooo who knows. As far a hygiene no I sure am not little miz priss like I use to be. I shower nearly every day unless I am really sick. I do not wash my hair everyday. I rarely go more than two days without washing my hair. I do not style my hair. I can not see to apply makeup.
Sage95351 2 years ago
Well you are ahead of me LOL, I only do hair and makeup for vidoes or if I am going out. Have you talked to your doctor about any of the other drugs like Copaxone? Is was the easiest one for me, not side effect except some lumps and bumps at the injection site.
MSVlogSupport 2 years ago
I am currently taking LDN. I've been on it seven months. I stopped it after going off Tysabri (was on it for 20 doses). It has helped my fatigue, it has increased my strength and I have more endurance. I would recommend it to every MS patient, but I would warn people that it's not a monotherapy; Diet needs to be changed, too. People with MS should stay away from gluten, dairy, soy and sugar.
I could write a book about my experiences, Andrea! lol Thanks for doing this video!!
enfermera72 2 years ago
The diet thing just seems way to hard to me. what on earth can you eat??
MSVlogSupport 2 years ago
You can have meat, fish and vegetables. I eat fruits such as blueberries, raspberries. I cook gluten-free muffins that I eat for breakfast. Basically you need to stay away from breads, pastas and fried foods. I've been eating this way for more than two years and I've lost around 150 lbs. The first couple of weeks were hard (detoxing), but afterwards it was easy. I feel so much better cokking my own meals (or husband cooking) than going out to a restaurant. As far as dairy, replace w/almond milk.
enfermera72 2 years ago
I have a great curry chicken recipe I fix almost weekly (per hubby's request). It has coconut milk, all the spices, chicken, peas, and carrots. I put it over brown rice. Yummy!!
enfermera72 2 years ago
This recipe sounds yummy! Would there be any chance of having it?
Lillian0813 2 years ago
Sure! Let me type it up and figure out a way to post a link to it or put it on a PDF file. It may take me a day to do it, but I will post it. :)
enfermera72 2 years ago
I know I have to prioritize my day. I do what I have to do, and what's left is put off for another time. Usually that means showering, shaving, etc. I have found that a shower chair helps me with the fatigue and vertigo.
Incontinence is so embarrassing! I've had accidents, too. I would suggest scheduling bathroom visits every 3-4 hours, even if you think you don't need to go. Another tip is to practice Kegel exercises. This helps condition the muscles of the bladder.
More on next post..
enfermera72 2 years ago
Comment removed
enfermera72 2 years ago
Hi. My husband has relapse/remitting MS and takes the weekly Avonex shot. As I type this, I was going to ask what shot you take and how often? But you just said Avonex, lol. Do you take Ibuprofen before the shots? I'm looking to understand what he goes through w/the MS and am constantly forgetting he has MS because you can't really tell he has it. I really enjoy watching your vids. Thx for making them.
Lillian0813 2 years ago
Hi Lillian,
First I think it is great that you are trying to understand what your husband is dealing with.
I take Motrin and Tylenol at pretty high doses. It was what the doctors reccomended.
I am glad you like the videos, does your husband get involved at all??
MSVlogSupport 2 years ago
My husband takes 3 ibuprofens before the shot, and then more after about 5 hours of taking the first dose. He doesn't get involved, but really should. He and I go to MS conferences given by MS Active Source. We tried getting involved in a support group, but they don't meet regularly and because they met at night on a weeknight and at the time we started going, he couldn't attend because of work schedule conflicts. He just kind of "deals" with it on his own w/my help.
Lillian0813 2 years ago
Dear Andrea, you do know me a little by now, right?
People will have to force me to take another drug so no, I won't take the new pills if I don't have to and if I can avoid it. I won't take Tysabri forever and I hope that I can have a better choice with Zamboni's discovery! I don't care as much about the way I look, not as much as I used to. I do pay attention to what I eat and follow certain rules but not all of them. Thank YOU for doing this. I might make a video if I feel better tomorrow.
angelusa73 2 years ago
Yes Angela I do feel that I know you a little by now LOL
I totally understand your stance on the drugs. I hate taking them as well, but I am afraid of not being on something.
That is why I asked the question about progression, if I am progressing do I still need to take them.
BTW you always look beautiful!!
MSVlogSupport 2 years ago
Dear Andrea
I so hope that Avonex will stop making you sick and that it will start helping you!
That medicine didnt work for me at all and so didn't the other 3 that I have tried so I am not easy to convince when it's about taking drugs! I am not sure how doctors can tell that we are progressing without seing the typical signs of more lesions or disability that slowly happens with time. I do think that they want people to take medicine anyway. You look very beautiful too and keep on smiling :)
angelusa73 2 years ago
More questions, YAY! i love answering questions.. (u can imagine what i was like in school :P ) i will make a vid 2moro, even though i dont take tysabri, I will answer them to my best with my current position with MS.. thanx..
omexmc80 2 years ago
Omario you crack me up. You must have been much better in school than I was.
The question wasn't just for those on Tysarbi and I aminterested in all the meds people take. Was just curious about the people on Tysbari due to the risk of PML.
Just looking at you I know that you take a shower every day LMAO!!
MSVlogSupport 2 years ago
u will find out about my shower situation when i get to make my vid.. and i dont take a shower to look GOOD!! :D that comes naturally.. LMAO im joking.. he he i would do a video now but everyones asleep and its 3:13am,
take care ;)
omexmc80 2 years ago