Re: Tysabri stuff

[Guest guest]

Kate~

I am so sorry you are still in such pain. I know you've got to be feeling a little berserko about now. I hope you find some relief for it soon. I'll continue to lift you in prayer.

Love and blessings...Val

Tysabri stuff

Of course when I put the call through to MS Lifelines--Tysabri folk--they obviously didn't 'know' anything of the report of rebounding...yeah, tell me about it!

However, I think I finally have my answer about my headaches--Tysabri. I've had a headache for about 15 days now. It began about 2 wks after my 3rd infusion. It's a real bad headache, that makes me nauseus as well. Apparently, headaches are #1 on the list of side effects, and are reported by about 38%. I kept telling my neuro about it, thinking he might want to do an MRI--but even HE didn't think about Tysabri. So, then the fellow put me on with a gal that does reports to the FDA, and she took the info.

I had also asked the fellow about next wk when I have infusion #4. I'm having some worsening of my MS--and they always ask before they infuse you if you have any new or worsening symptoms. I asked him if I should 'lie', as it seems if you answer anything 'yes', they have a problem with infusing you. He said it is just to maintain the safety issues surrounding Tysabri, and yes, I should answer as honestly as possible, and if they have a question or concern about infusing me, they need to call my neuro....Not sure HE'S gonna be thrilled with getting a call on this...oh well...I have been telling Sharon that my TN is reaching heights of pain like never before! I cannot stand it. I'm going to see the fellow who did the Gamma Knife this Friday...but I just don't expect much from him...What's he going to say? Sorry, too bad..I've done what I can for you; there is nothing left! I am encouraged to read that this Nerve Fix that Sharon has been taking seems to really be working and helping her TN. So, I'm ordering some for myself today. This pain has got to be 'put down'!

love to all~kate

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[Guest guest]

Yeah, sure they hadn't heard anything of the studies done. lol I hope the NerveFix helps you as much as it's helped my Mom, Kate. HUGS, Challis Kate Rothschild wrote: Of course when I put the call through to MS Lifelines--Tysabri folk--they obviously didn't 'know' anything of the report of rebounding...yeah, tell me about

it! However, I think I finally have my answer about my headaches--Tysabri. I've had a headache for about 15 days now. It began about 2 wks after my 3rd infusion. It's a real bad headache, that makes me nauseus as well. Apparently, headaches are #1 on the list of side effects, and are reported by about 38%. I kept telling my neuro about it, thinking he might want to do an MRI--but even HE didn't think about Tysabri. So, then the fellow put me on with a gal that does reports to the FDA, and she took the info. I had also asked the fellow about next wk when I have infusion #4. I'm having some worsening of my MS--and they always ask before they infuse you if you have any new or worsening symptoms. I asked him if I should 'lie', as it seems if you answer anything 'yes', they have a problem with infusing you. He said it is just to maintain the safety issues

surrounding Tysabri, and yes, I should answer as honestly as possible, and if they have a question or concern about infusing me, they need to call my neuro....Not sure HE'S gonna be thrilled with getting a call on this...oh well...I have been telling Sharon that my TN is reaching heights of pain like never before! I cannot stand it. I'm going to see the fellow who did the Gamma Knife this Friday...but I just don't expect much from him...What's he going to say? Sorry, too bad..I've done what I can for you; there is nothing left! I am encouraged to read that this Nerve Fix that Sharon has been taking seems to really be working and helping her TN. So, I'm ordering some for myself today. This pain has got to be 'put down'! love to all~kate

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[Guest guest]

Yeah, sure they hadn't heard anything of the studies done. lol I hope the NerveFix helps you as much as it's helped my Mom, Kate. HUGS, Challis Kate Rothschild wrote: Of course when I put the call through to MS Lifelines--Tysabri folk--they obviously didn't 'know' anything of the report of rebounding...yeah, tell me about

it! However, I think I finally have my answer about my headaches--Tysabri. I've had a headache for about 15 days now. It began about 2 wks after my 3rd infusion. It's a real bad headache, that makes me nauseus as well. Apparently, headaches are #1 on the list of side effects, and are reported by about 38%. I kept telling my neuro about it, thinking he might want to do an MRI--but even HE didn't think about Tysabri. So, then the fellow put me on with a gal that does reports to the FDA, and she took the info. I had also asked the fellow about next wk when I have infusion #4. I'm having some worsening of my MS--and they always ask before they infuse you if you have any new or worsening symptoms. I asked him if I should 'lie', as it seems if you answer anything 'yes', they have a problem with infusing you. He said it is just to maintain the safety issues

surrounding Tysabri, and yes, I should answer as honestly as possible, and if they have a question or concern about infusing me, they need to call my neuro....Not sure HE'S gonna be thrilled with getting a call on this...oh well...I have been telling Sharon that my TN is reaching heights of pain like never before! I cannot stand it. I'm going to see the fellow who did the Gamma Knife this Friday...but I just don't expect much from him...What's he going to say? Sorry, too bad..I've done what I can for you; there is nothing left! I am encouraged to read that this Nerve Fix that Sharon has been taking seems to really be working and helping her TN. So, I'm ordering some for myself today. This pain has got to be 'put down'! love to all~kate

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

Yeah, sure they hadn't heard anything of the studies done. lol I hope the NerveFix helps you as much as it's helped my Mom, Kate. HUGS, Challis Kate Rothschild wrote: Of course when I put the call through to MS Lifelines--Tysabri folk--they obviously didn't 'know' anything of the report of rebounding...yeah, tell me about

it! However, I think I finally have my answer about my headaches--Tysabri. I've had a headache for about 15 days now. It began about 2 wks after my 3rd infusion. It's a real bad headache, that makes me nauseus as well. Apparently, headaches are #1 on the list of side effects, and are reported by about 38%. I kept telling my neuro about it, thinking he might want to do an MRI--but even HE didn't think about Tysabri. So, then the fellow put me on with a gal that does reports to the FDA, and she took the info. I had also asked the fellow about next wk when I have infusion #4. I'm having some worsening of my MS--and they always ask before they infuse you if you have any new or worsening symptoms. I asked him if I should 'lie', as it seems if you answer anything 'yes', they have a problem with infusing you. He said it is just to maintain the safety issues

surrounding Tysabri, and yes, I should answer as honestly as possible, and if they have a question or concern about infusing me, they need to call my neuro....Not sure HE'S gonna be thrilled with getting a call on this...oh well...I have been telling Sharon that my TN is reaching heights of pain like never before! I cannot stand it. I'm going to see the fellow who did the Gamma Knife this Friday...but I just don't expect much from him...What's he going to say? Sorry, too bad..I've done what I can for you; there is nothing left! I am encouraged to read that this Nerve Fix that Sharon has been taking seems to really be working and helping her TN. So, I'm ordering some for myself today. This pain has got to be 'put down'! love to all~kate

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

Kate,

Has anyone suggested Novantrone to you yet? It's an infusion as well.. I think you only get like 3 infusions in a year as well.. You might want to do some googling of it, and see what you think... I myself was not willing to try it, but I still had the option of Copaxone when the neuro wanted to do Novantrone.. and I wasn't willing to take any of the risks, slim as they were to try Novantrone when there was still something with less risk involved that could be tried. I'm thinking being as you are now doing Tysabri, that Novantrone may also be an alternative for you, IF the Tysabri needs to be stopped... Who knows, maybe the Novantrone will counteract the Tysabri rebound thing, if you do have to stop taking it.

Good luck with everything, and I sure hope that the TN soon settles down for you. I can't imagine what you are suffering through. I'm pretty sure the TN is starting for me, but nothing really major at this point.. but it is a little annoying when it happens... I have no idea how I'll keep the hair intact on my head when the "real" stuff starts though.

|}onna

Tysabri stuff

Of course when I put the call through to MS Lifelines--Tysabri folk--they obviously didn't 'know' anything of the report of rebounding...yeah, tell me about it!

However, I think I finally have my answer about my headaches--Tysabri. I've had a headache for about 15 days now. It began about 2 wks after my 3rd infusion. It's a real bad headache, that makes me nauseus as well. Apparently, headaches are #1 on the list of side effects, and are reported by about 38%. I kept telling my neuro about it, thinking he might want to do an MRI--but even HE didn't think about Tysabri. So, then the fellow put me on with a gal that does reports to the FDA, and she took the info.

I had also asked the fellow about next wk when I have infusion #4. I'm having some worsening of my MS--and they always ask before they infuse you if you have any new or worsening symptoms. I asked him if I should 'lie', as it seems if you answer anything 'yes', they have a problem with infusing you. He said it is just to maintain the safety issues surrounding Tysabri, and yes, I should answer as honestly as possible, and if they have a question or concern about infusing me, they need to call my neuro....Not sure HE'S gonna be thrilled with getting a call on this...oh well...I have been telling Sharon that my TN is reaching heights of pain like never before! I cannot stand it. I'm going to see the fellow who did the Gamma Knife this Friday...but I just don't expect much from him...What's he going to say? Sorry, too bad..I've done what I can for you; there is nothing left! I am encouraged to read that this Nerve Fix that Sharon has been taking seems to really be working and helping her TN. So, I'm ordering some for myself today. This pain has got to be 'put down'!

love to all~kate