| Roy |
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Reply with quote | #31 |
Hello Shelly and all. Glad to see that you have join our little group Shelly. I think I was the first in this bunch of MS's to take Tysabri. All that I can say is good things about Tysabri. First there is no needle that I have to give my self once a week or every day. You only get stuck once a month by some one else. Second I haven't has any bad side affect from it. Third I think I see some improve from it. It not much just a little lest numbest in my fingers on one hand. I know that I have a lot more energy. Just to give you an idea what I'm talking about. I can work in my garden or do house work such as washing dishes or scrubbing the floor for a couple a couple of hours with out stopping. My remembering if you want to call it that is coming back. Before I would go into a room or to the store and couldn't remember what I was suppose to get. I still do that some time but it isn't no way as bad as it was. I use to carry a pad and pen with me all the time. It not a sure fire cure but I do think that it has slowed or stop my MS. I know that I miss January infusing because a change in insurance and I could see a big difference by the last of January. I go in for my 12th infusion on the 12th of June. Every one MS is difference. I talk to one lady that after 18 infusion she could stand and take a step or two. But most like me have seen but a little improvement if any. But any improvement is better than going backward, Shelly if you or anyone have any questions then just ask. If I don't have the answer then maybe some else on the board will. Roy  |
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| Roy's #1 Fan |
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Reply with quote | #32 |
Dear Roy,
I think your info is great.
You give real information and examples.
You say it like it is.
ps. having energy to do your garden and regular everyday housework in moderation..... wow and way to go!
very informative and it makes me glad
ROY FOR PRES
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| Jill |
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Reply with quote | #33 |
Hi Everyone
I'm new to your group. I have RRMS diagnosed in 93. Have been on Tysbri for about a year now. Can't really say I feel different or better, just don't have to give myself daily shots whoo whoo. I glad to hear that other people have leg pain I thought I was alone. Does anyone have any stomach problems? I'm very nauseous and tummy hurts all the time. I've had every test know to man and nothing. I'm really tired of all the tests and meds. Seriously how many drugs can we take to control all our aches. I try to walk on a trend mill everyday to keep my leg strengh up and take my new grand baby for strolls. I laugh alot because that helps. It seems I've lost some of my mental issues on consentration and can't drive very far anymore, but it could be worse. I don't know why we have this, or where it came from and someday there will be a cure. Thanks for listening, everyone have a nice day.
Jill
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| Diana |
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Reply with quote | #34 |
Hi Jill, 
Welcome! Nice to have you with us. I was also diagnosed in '93 RRMS and am on Beta. I'd say the worst problem I have is with my legs. I can't stand for a long time or walk very far. My legs ache most of the time. Neurontin is what seems to help. One thing I don't have is stomach problems. Wow!, that's a shocker. One problem I don't have. HaHa I think it's great that you can walk on the tread mill and take your new grand baby (Congratulations!) for strolls. Being able to laugh is definately the best medicine. I love a good laugh. I don't understand why they don't have a cure yet. What will it take? This monster can really be frustrating. Nice to hear from you.
Talk Soon 
Diana
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| Jill |
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Reply with quote | #35 |
Hi Diana,
So glad to talk to someone who understands us. I also have problems with legs, get real tired and can't stand for long periods of times, sitting bothers me also. I only do the trend mill for 5mins now hurts too much for a long time. I haven't worked now for about four years, got to be to much for me. I couldn't work and take care of my home. I still get real tired in the late afternoon. I can now pace myself on the house work and do as much or as little as I want and not worry about it. We have moved into a new house that is one level for me, no more stairs if I don't want to. It really has made a difference for me. I am blessed to have our daughter live right across the street and she so mother hens me. Got to run for now, talk at you later.
Jill
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| MeMeMe |
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Reply with quote | #36 |
Jill,
I'm still working 40 hours a week and do household chores on the weekend. That's very smart to move to a one level house. When I do the laundry I have to walk up and down steps to the basement. It's not easy hauling the loads of laundry. I just take it step by step. It's great to have your daughter so close. You never know when you'll need help and the fact she's like Mother Hen tells me she already takes good care of you. My husband Stan takes very good care of me. He's always asking if he can help me and of course, I always say No even when I do need it. Just this weekend while I was doing the laundry he just took it upon himself to grab one of the baskets and bring it down. Just recently he decided to do the grocery shopping because these stores are so big by the time I'm done my legs give out. I've gone before and ridden one of those scooters around. Very helpful but not big as a cart.
Hope you have a wonderful day! 
Take Soon
Diana
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| Jill |
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Reply with quote | #37 |
You go girl!!!!40hrs that would kill me. I was down to part-time when I had to quit. I can understand stairs my laundry room was downstairs also, I hated it. You sound like you push yourself like I do. I don't ask for help, and do as much as I can before I drop, I guess we test our limits. I try to go like I did before and find out that doesn't always work. I was just awarded disability, I have been fighting four years for it. When I received the letter I just cried. You have to hire an attorney to win, that really irratates me. But now I can feel better about helping with money. My husband is a good man and never complains that I don't work and he takes care of so much it just makes me sad that I don't contribute, but now I can yeah!!!!!! Well you have a good week take care of yourself.
Jill
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| Just Me..... |
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Reply with quote | #38 |
Yep, your right - it kills me but I push myself until I just can't go anymore. The worst is the burning sensation I have in my legs. My feet feel like bricks. I know how you feel when you say you wish you could contribute more. He takes care of alot and I wish I could help more but I can only do so much and I HAVE TO quit. I just hate it because regular folks just don't understand. It sounds like I do nothing but I do my best to put dinner together, clean kitchen, dishes, vacuuming, dusting, laundry, change sheets weekly, help put groceries away, etc. I've been curious  what it would take to get disability because I'm not getting any better.
Back to work......
Talk Soon
Diana
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| Jill |
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Reply with quote | #39 |
Hi
Well it takes alot. My daughter hooked me up with a M.S. clinic about 50 miles from here. After I quit work almost 5 yrs ago now I started to look into S.S. You can't do it on your own and win. After 2 or 3 turn downs, I hire an attorney who specializes in our cases. I had to keep a daily log of my activities and how long it took me to do them, how often I had to rest, good days and bad days when I couldn't leave the house. And all my medical records, which like yours is probably a semi load. After I hired my attorney I had to wait a year and a half before I could even get on the dockets to see a judge. So finally my time came for a hearing with a judge and before I could see him he looked at my file and ruled full disability. If I could of done cartwheels I would have. He looked at my evals from P.T. and all my Docs I don't even remember seeing for the last 4 or 5 years and with my age and education he determined I really couldn't function in the real world working. It is a very frustrating system and you have to be patient. But if you have a M.S. doctor go talk to an attorney right away, they don't lose. Depending when your last day of work is or when you are unable to work, you will get back pay, and then a monthly check depending on how long you have worked and how many credits you have built up in your social security fund. There is no cure for our disease and things change for us from day to day. Diana go for it talk to an attorney, you are intitled to live without killing yourself day after day. We did not ask for this, people don't understand the pain we have and if we are not in a wheelchair people don't see our disability. But we know the pain and the fog we live in and we need to be able to contribute to our household and not kill ourselves in the process. Boy or boy did you get me started. Let me know if you have any more ? I am trying to get ready for a garage sale, what have I done.
Hope this has helped
Jill
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| Tiffany |
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Reply with quote | #41 |
Hello everyone, I just googled tysabri and came across this website. I am a 23 year old senior at the University at Buffalo. I was diagnosed in June 2008 with MS. I have had many symptoms but after streiods IV and avonex treatment I am a lot better, but weaker and sadly, more depressed. I am having difficulty receiving the injection and/or giving it to myself. I also do holistic treatment, such as taking supplements and doing acupuncture. My Neurologist is concerned because sometimes I miss my injection (As I am not too fond of medicine n sh!t)....Anyways, I would like to consider Tysabri, but I am nervous about the brain infection and the spasms. The only plus from avonex seems to be the actually way you intake the medication. Is there anyone else that can tell me about Tysabri?? What about getting over my fear of needles?? Does anyone feel good on avonex?? (As I realize I feel a lot weaker). So many questions, so little answers…
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| Roy |
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Reply with quote | #42 |
Hello Tiffany;  I sorry to hear that you have such a hard time with your MS but we all been thru what you going thru but for most of us it was a long time ago. I think that I'm the only one that post on here that take Tysabri. I will try to answer your questions the best I can. I am no expert but on June the 8th I got the 23th one. I do think that it has help me. I have notice that I have a little more feeling in my fingers. The good part about Tysabri is that it is an IV and you only take it once a month. As for the brain infection that was when Tysabri first went on the market and then I think it was something like 3 or 4 people out of 20 thousands or so. That was because they was taking Avonex and Tysabri at the same time. Since then I think that I read some place that there was like 300 thousand people taking Tysabri now. Not all people get the spasms like I do. I just one of the lucky one. You feel free to ask anything about my taking Tysabri and I do my best to answer you. Roy |
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| Kim |
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Reply with quote | #43 |
i just thought i'd join your conversation since Roy DOES seem to be the only one out of the group on tysabri. Like him, I had my 23rd infusion in the beginning of june. I was diagnosed Jan 2007 with a very aggressive case. I tried Rebif and even while on it i had to be put on IV steroids every month and became very depressed. I was taken off of it and prescribed tysabri. By the time I was supposed to start, I had a major exaserbation and ended up in the hospital for 2 weeks learning how to walk again and how to control my hands well enough to write. about 2 weeks after i got out of the hospital, I had my 1st infusion. Let me tell you, after the 1st infusion, i stopped using my cane that the hospital issued to me and the tremors in my hands and body were gone. The only time i ever have any problems now is when the medicine starts to wear off about 3 weeks later. I do have the spasticity in my legs and was given zanaflex which has not been helping. Tysabri has been the best thing that could have ever happened to me! |
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| Roy |
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Reply with quote | #44 |
I'm glad that tysabri is working for you Kim. I'm not doing as good as you but I was in this chair before I started taking tysabri. I know what you mean about every 3 weeks or so I can see a difference when the tysabri start to wear off. Roy |
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| Lin |
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Reply with quote | #45 |
Hi Roy and
Welcome to Tiffany and Kim,
Once again, Roy, thanks for the info.
And Kim thanks also.
Tiffany:
I started out with C. (for about 6 months).
Switched to A. (for about 3 years).
Been taking R. for ... ummmm.. 5 almost 5 1/2 years.
I know some people have no trouble or problems what so ever with injections (shots).
I am not one of them and try as I do... I don't think it gonna happen (there is always hope, however).
I really don't think I will ever get used to giving myself a shot.
[Call me a 'fraidy-cat' or worse, but I don't like anyone (with the exception of 1 person to date) to give me any type of injection.].
I know I really have to or should take the med, so I do it.
I don't like it but I do it because I am sure it will help me.
I don't like missing my shot, but sometimes I have to.
I do my best to take it asap, if I miss my scheduled shot.
(I take R. 3x/week)
Let me finish before I get timed out....
Lin
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