jalmsalter
05-26-2009, 06:02 PM
I went to c dr. last week and I am getting ready to start tysabri... I am just wondering if anyone has taken this drug, and what were your thoughts on this med.
I am not presently on anything bc I can't handle the needles :eek: I just want all of these sensations to stop, and I hope this medication will help!!
I am not presently on anything bc I can't handle the needles :eek: I just want all of these sensations to stop, and I hope this medication will help!!
Sponsor
MSNik
05-26-2009, 07:47 PM
Hi there. Its not likely that your symptoms will stop, you are aware of that? The idea behind Tysabri and all other MS drugs is to slow down progression, thus reducing the chances of MORE symtoms starting. The ones which are already happening, probably wont go away.
Im experiencing the same thing with Rebif. The onset of symtoms when I was dx 3 years ago included tingling and burning in my left hand and fingers. Ive tried every single drug known for nerve pain and nothing has stopped including 3 years on Rebif; however Im happy to say that I havent had a single relapse or any additional MRI activity since starting my drug.
Good luck to you....keep us posted
nikki
Im experiencing the same thing with Rebif. The onset of symtoms when I was dx 3 years ago included tingling and burning in my left hand and fingers. Ive tried every single drug known for nerve pain and nothing has stopped including 3 years on Rebif; however Im happy to say that I havent had a single relapse or any additional MRI activity since starting my drug.
Good luck to you....keep us posted
nikki
MSJayhawk
05-26-2009, 11:16 PM
I treat my symptoms without meds. Stretching, cold compresses, avoiding triggers, acupressure, and heating pads. The sensations will likely persist, but they may go away. Meds are no guarantee. :angel:
jalmsalter
05-27-2009, 04:01 PM
MsJay,
Do you work, or stay home?? I am super stressed out from working and having two kids(13,11) and I am considering seeing if my dr will help me w/disability:( I am starting to slur my words, and the confusion is scary!! My kids are really giving me a hard time about my ms and I just want to CRY like a baby:(
Do you work, or stay home?? I am super stressed out from working and having two kids(13,11) and I am considering seeing if my dr will help me w/disability:( I am starting to slur my words, and the confusion is scary!! My kids are really giving me a hard time about my ms and I just want to CRY like a baby:(
MSNik
05-27-2009, 05:22 PM
Jamsalter,
How long have you had MS? is this possibly because you are new to the disease, or am I mistaken and you have dealt with this for some time? Im only asking because you sound really frustrated and if this is something new that you are dealing with, it would be understanding that you feel this way. MS comes and goes for the most part...the symptoms that is...however, anxiety and worrying about all that you are dealing with, can make it harder to deal with.
I hope you are geting the support that you need from your other family members? And, I hope you realize that there is help for your kids understanding available...the MS society has all sorts of help . I utilized it and it helped me quite a bit...
I hope things get easier for you soon.
nikki
How long have you had MS? is this possibly because you are new to the disease, or am I mistaken and you have dealt with this for some time? Im only asking because you sound really frustrated and if this is something new that you are dealing with, it would be understanding that you feel this way. MS comes and goes for the most part...the symptoms that is...however, anxiety and worrying about all that you are dealing with, can make it harder to deal with.
I hope you are geting the support that you need from your other family members? And, I hope you realize that there is help for your kids understanding available...the MS society has all sorts of help . I utilized it and it helped me quite a bit...
I hope things get easier for you soon.
nikki
MSJayhawk
05-27-2009, 06:03 PM
MsJay,
Do you work, or stay home?? I am super stressed out from working and having two kids(13,11) and I am considering seeing if my dr will help me w/disability:( I am starting to slur my words, and the confusion is scary!! My kids are really giving me a hard time about my ms and I just want to CRY like a baby:(
I worked until 2002 when it became abundantly clear that I would have to give up work- Paid Work. Disability has its blessings. I now home school my youngest and get rest when I need it. I do not go out much. Every 2 weeks a trip to the library and Wal-Mart and every Sunday to church. I think that once you reach the breaking point, disability is the best option- it has been for me! :angel:
Do you work, or stay home?? I am super stressed out from working and having two kids(13,11) and I am considering seeing if my dr will help me w/disability:( I am starting to slur my words, and the confusion is scary!! My kids are really giving me a hard time about my ms and I just want to CRY like a baby:(
I worked until 2002 when it became abundantly clear that I would have to give up work- Paid Work. Disability has its blessings. I now home school my youngest and get rest when I need it. I do not go out much. Every 2 weeks a trip to the library and Wal-Mart and every Sunday to church. I think that once you reach the breaking point, disability is the best option- it has been for me! :angel:
jalmsalter
06-01-2009, 04:07 PM
I was diagnosed on March 7, 2008, a day that I will never forget. At that time the neuro said that I had had it for at leat a decade. He also said that I have 60% scar tissue in my brain and that there is some in my spine as well. I am not getting the support that I need from my family. My husband is starting to help and that is only bc I am so emotional. I just want to cry all of the time. My kids are mean and I am just too stressed out!!!! I am thinking of quiting my job and getting on disablity, and I want time to figure out what I can do. I have been dizzy lately and my memory is realy being affected. I have been dragging my foot alot lately and nothing gets rid of the pain that I suffer with in my back. Right now I am taking baclofin 10mg and it isn't even touching the pain. I was hoping that if I start on the Tysabri, it will help with some of this pain. That is the only reason that I am considering it. Do you think it would be better for me to see a pain dr??:confused:
jalmsalter
06-01-2009, 04:10 PM
I have been having symtoms since my last pregnancy. Over 11 yrs!! The drs said that I had pinched nerves everytime I would present a problem.
MSNik
06-01-2009, 05:00 PM
Jamslater, I am so sorry you are having so many issues. I do NOT think seeking a pain specialist is the way to go, unless drugs are what you are looking for....pain specialists seem to automatically prescribe heavy duty pain pills, and nothing more.
Tysabri, on the other hand, is for Relapsing/Remitting MS and is sometimes used for other types of MS...its NOT FOR PAIN. You will not get any relief of your symptoms from taking Tysabri, and in fact, its not supposed to give you pain relief..
Are you really sure about Tysabri ? Its a heavy duty MS drug which is given intervenously, in order to hopefuly stop the progression of MS. Its not guaranteed. Many people I know who are on it, say that they get a burst of energy and feel better, up to 3 weeks after their infusion, but since its a monthly infusion, by week 3 they are starting to feel bad again. For some, 3 weeks of feeling better is worth it. The side effects to Tysabri are very serious, although rare. Make sure you have discussed this with your doctor at length before going this route, because from what you are saying, what you expect to get out of it, isnt what the drug is supposed to do.
Now, if you dont mind me saying so- you have more immediate concerns to address. How about anxiety and possibly Depression? These two things go hand in hand with MS, and with all you are dealing with- its not unusual for you to be experiencing these things. Have you discussed Cymbalta, a anti-depressent which also seems to help nerve pain with your doctor? Or even taking some Xanax or other anti anxiety drug, so that you can better cope with what you are facing? You need to forget the numbers. I have more lesions then you do- and that means nothing. The amount of scar tissue or lesions means NOTHING to an MS patient. Its the placement of where they are which matters. With my lesions, Ive had MS for over a decade as well, and guess what? I run, exercise- work 80+ hours a week and basically manage my life just like I did before I found out I had MS...however, if you have lesions which are debilitating, you need to look at your situation from a symtom management point of view. And, you need a doctor who will work with you. And, more then anything, you need a support system. If your husband sees you upset all the time, he probably feels helpless. Can you blame him? You are going to have to work on communication with him, in order for him to respond to you in a positive way....explaining to him what you are going thru, asking for specific help- allowing him "into your world" instead of crying...believe me (ive been there) it makes a difference.
I wish I could offer you more, but I think the starting place is better communication with your doctor; explaining what you need, and understanding realistic expectations- then discuss it with your husband. he might actually listen to you if you explain to him your needs. Crying, unfortaunately, wont get you anywhere....and if its venting you need: DO IT HERE. We get it, and we understand your frustation and pain...promise you, there is always someone here who has been able to identify with what you are describing..but please, stand up for yourself and get the answers you deserve! Somehow, Im not convinced you really know what Tysabri is supposed to do, and that would be your doctors responsiblity to explain to you.
Let us know how we can help.
Nikki
Tysabri, on the other hand, is for Relapsing/Remitting MS and is sometimes used for other types of MS...its NOT FOR PAIN. You will not get any relief of your symptoms from taking Tysabri, and in fact, its not supposed to give you pain relief..
Are you really sure about Tysabri ? Its a heavy duty MS drug which is given intervenously, in order to hopefuly stop the progression of MS. Its not guaranteed. Many people I know who are on it, say that they get a burst of energy and feel better, up to 3 weeks after their infusion, but since its a monthly infusion, by week 3 they are starting to feel bad again. For some, 3 weeks of feeling better is worth it. The side effects to Tysabri are very serious, although rare. Make sure you have discussed this with your doctor at length before going this route, because from what you are saying, what you expect to get out of it, isnt what the drug is supposed to do.
Now, if you dont mind me saying so- you have more immediate concerns to address. How about anxiety and possibly Depression? These two things go hand in hand with MS, and with all you are dealing with- its not unusual for you to be experiencing these things. Have you discussed Cymbalta, a anti-depressent which also seems to help nerve pain with your doctor? Or even taking some Xanax or other anti anxiety drug, so that you can better cope with what you are facing? You need to forget the numbers. I have more lesions then you do- and that means nothing. The amount of scar tissue or lesions means NOTHING to an MS patient. Its the placement of where they are which matters. With my lesions, Ive had MS for over a decade as well, and guess what? I run, exercise- work 80+ hours a week and basically manage my life just like I did before I found out I had MS...however, if you have lesions which are debilitating, you need to look at your situation from a symtom management point of view. And, you need a doctor who will work with you. And, more then anything, you need a support system. If your husband sees you upset all the time, he probably feels helpless. Can you blame him? You are going to have to work on communication with him, in order for him to respond to you in a positive way....explaining to him what you are going thru, asking for specific help- allowing him "into your world" instead of crying...believe me (ive been there) it makes a difference.
I wish I could offer you more, but I think the starting place is better communication with your doctor; explaining what you need, and understanding realistic expectations- then discuss it with your husband. he might actually listen to you if you explain to him your needs. Crying, unfortaunately, wont get you anywhere....and if its venting you need: DO IT HERE. We get it, and we understand your frustation and pain...promise you, there is always someone here who has been able to identify with what you are describing..but please, stand up for yourself and get the answers you deserve! Somehow, Im not convinced you really know what Tysabri is supposed to do, and that would be your doctors responsiblity to explain to you.
Let us know how we can help.
Nikki
jalmsalter
06-03-2009, 05:58 PM
MSNIK,
I know that you all understand and that is why I am so thankful to this site:D
I just don't really know a whole lot about ms!!! I have done research but I can never find what I am looking for!! The info that I do find scares the crap out of me. I really appriciate the info that you gave me about anxiety and depression. I will definantly talk to my dr about all of that. You guys are all great!!
Thanks so much
I know that you all understand and that is why I am so thankful to this site:D
I just don't really know a whole lot about ms!!! I have done research but I can never find what I am looking for!! The info that I do find scares the crap out of me. I really appriciate the info that you gave me about anxiety and depression. I will definantly talk to my dr about all of that. You guys are all great!!
Thanks so much
MSNik
06-03-2009, 07:56 PM
jalmsalter, as always- no thanks needed. But, Im glad we are helping you here.
Try to contact your local MS society. Or at least find them- there is so much BAD info on the web and so very few authorized places to get info- you really do need some assistance with some of the things you are dealing with, and they will be the best place to ask for help, locally.
I hope your doctor is receptive to the questions you ask...make sure you take a list with you, so you dont forget anything!
Good luck..
Nikki
Try to contact your local MS society. Or at least find them- there is so much BAD info on the web and so very few authorized places to get info- you really do need some assistance with some of the things you are dealing with, and they will be the best place to ask for help, locally.
I hope your doctor is receptive to the questions you ask...make sure you take a list with you, so you dont forget anything!
Good luck..
Nikki

