Re: New Member Introduction

[Guest guest]

hi Tina

I also take amitriptyline 100mg nightly, for pain. it does take the edge off my pain.

ann

New Member Introduction

Hi. My story goes back three and half years. I've had epilepsy since I was 16. I also have bipolar disorder. In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done. So I had an insurance change from United Health Care to Medicaid. Up until this time, I had been seizure free for about 10 years. Until October of 2007, when I had a seizure out of the blue. Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong. It showed white matter lesions. To this day, I think the seizure was caused by MS. He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face. (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication). Around this time I was also having other symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm. The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced. He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation. Of course, the spinal tap came back positive. I was immediately started on Avonex. He wasn't concerned about the Avonex causing seizures, but I was. Three days after my first injection, I had another seizure. Two minutes after getting out of the car. I ended up basically breaking my butt, but it took three months to get a confirmation of that. Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them. I made the decision then that I would NEVER drive again.On Avonex, the "flu like side effects" were severe, keeping me down half the week. Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving. This was my first time having a full month long flare. The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia. I wasn't so sure, but I continued with the medication. Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week. I took the medication break, but I also asked to see an MS specialist. That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis. Luckily, they had a nationally recognized MS clinic, and the entire neurology deparment was considered the best in the country. ( hospital/Washington University).I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone. About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working. That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness). Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc. By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40. She put off changing my medication until there was more proof that the Copaxone had kind of tapped out. Well, she got it. On May 12, I started feeling like I got hit by a truck. May 13 I started with severe nerve pain in my skin. Sometimes its bad and sometimes its not so bad. At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day. So far this has gone on for over three weeks. Once I got in to see her, she said it was pretty much a given that I need to change meds. Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication. To be truthful, every flare I've had I've felt like I was close to having a seizure. Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system. Once that bloodwork comes back, I'm likely to get started on Tysabri.Tina

[Guest guest]

Welcome to the group Tina. I'm glad you found us but I'm sorry you have the need, as we always say:)So the makers of Avonex blamed your severe reactions to fibro? I have fibro and was on Avonex for 5 years and had very few side effects from the Avonex. I think some people just respond differently to interferons--some are okay with it and others have a horrible time of it. But what do I know? lol What are you on for your seizures? Some of us take seizure meds for our nerve pain. But I'm sure you know that already. We have several members who have been on Tysabri or are currently. Kate was on Tysabri for several years and did very well on it. Now she is on copaxone.You've been through the ringer,

haven't you?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: mserslife <mserslife >Sent: Sun, June 5, 2011 12:26:17 PMSubject: New Member Introduction

Hi. My story goes back three and half years. I've had epilepsy since I was 16. I also have bipolar disorder. In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done. So I had an insurance change from United Health Care to Medicaid. Up until this time, I had been seizure free for about 10 years. Until October of 2007, when I had a seizure out of the blue. Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong. It showed white matter lesions. To this day, I think the seizure was caused by MS. He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face. (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication). Around this time I was also having other

symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm. The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced. He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation. Of course, the spinal tap came back positive. I was immediately started on Avonex. He wasn't concerned about the Avonex causing seizures, but I was. Three days after my first injection, I had another seizure. Two minutes after getting out of the car. I ended up basically breaking my butt, but it took three months to get a confirmation of that. Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them. I made the decision then that I would NEVER drive again.

On Avonex, the "flu like side effects" were severe, keeping me down half the week. Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving. This was my first time having a full month long flare. The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia. I wasn't so sure, but I continued with the medication. Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week. I took the medication break, but I also asked to see an MS specialist. That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis. Luckily, they had a nationally recognized MS

clinic, and the entire neurology deparment was considered the best in the country. ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone. About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working. That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness). Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc. By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40. She put off changing my medication until there was more proof that the Copaxone had kind of tapped out.

Well, she got it. On May 12, I started feeling like I got hit by a truck. May 13 I started with severe nerve pain in my skin. Sometimes its bad and sometimes its not so bad. At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day. So far this has gone on for over three weeks. Once I got in to see her, she said it was pretty much a given that I need to change meds. Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication. To be truthful, every flare I've had I've felt like I was close to having a seizure. Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system. Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina

[Guest guest]

I'm currently on Trileptal and Keppra XR for my seizures.  For my nerve pain, I'm on amitriptyline 100 mg, but with this flare, nothing is touching it, although if I wasn't taking the amitryptiline, I shudder to think of what the nerve pain would be like!

Tina

 

Welcome to the group Tina.  I'm glad you found us but I'm sorry you have the need, as we always say:)So the makers of Avonex blamed your severe reactions to fibro?  I have fibro and was on Avonex for 5 years and had very few side effects from the Avonex.  I think some people just respond differently to interferons--some are okay with it and others have a horrible time of it.  But what do I know?  lol 

What are you on for your seizures?  Some of us take seizure meds for our nerve pain.  But I'm sure you know that already.  We have several members who have been on Tysabri or are currently.  Kate was on Tysabri for several years and did very well on it.  Now she is on copaxone.

You've been through the ringer,

haven't you?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

 

 

To: mserslife <mserslife >

Sent: Sun, June 5, 2011 12:26:17 PMSubject: New Member Introduction

Hi.  My story goes back three and half years.  I've had epilepsy since I was 16. I also have bipolar disorder.  In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done.  So I had an insurance change from United Health Care to Medicaid.  Up until this time, I had been seizure free for about 10 years.  Until October of 2007, when I had a seizure out of the blue.  Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong.  It showed white matter lesions.  To this day, I think the seizure was caused by MS.  He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face.   (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication).  Around this time I was also having other

symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm.  The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced.  He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation.  Of course, the spinal tap came back positive.  I was immediately started on Avonex.  He wasn't concerned about the Avonex causing seizures, but I was.  Three days after my first injection, I had another seizure.  Two minutes after getting out of the car.  I ended up basically breaking my butt, but it took three months to get a confirmation of that.  Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them.  I made the decision then that I would NEVER drive again.

On Avonex, the " flu like side effects " were severe, keeping me down half the week.  Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving.  This was my first time having a full month long flare.  The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia.  I wasn't so sure, but I continued with the medication.  Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week.  I took the medication break, but I also asked to see an MS specialist.  That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis.  Luckily, they had a nationally recognized MS

clinic, and the entire neurology deparment was considered the best in the country.  ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone.  About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working.  That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness).  Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc.  By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40.  She put off changing my medication until there was more proof that the Copaxone had kind of tapped out. 

Well, she got it.  On May 12, I started feeling like I got hit by a truck.  May 13 I started with severe nerve pain in my skin.  Sometimes its bad and sometimes its not so bad.  At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day.  So far this has gone on for over three weeks.  Once I got in to see her, she said it was pretty much a given that I need to change meds.  Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication.  To be truthful, every flare I've had I've felt like I was close to having a seizure.  Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system.  Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina

[Guest guest]

Tina you sure have been through a lot. I don't have MS but my husband does. I

will keep you in my prayers.

Hugs

nne

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> New Member Introduction

>

> Hi. My story goes back three and half years. I've had epilepsy since I

> was

> 16. I also have bipolar disorder. In 2007, I was fired from my job

> because

> I was having a nervous breakdown, couldn't concentrate, so I had trouble

> getting the work done. So I had an insurance change from United Health

> Care

> to Medicaid. Up until this time, I had been seizure free for about 10

> years. Until October of 2007, when I had a seizure out of the blue.

> Once I

> got in with my new neurologist, he didn't think it was a big deal, but

> ordered an MRI to make sure nothing was wrong. It showed white matter

> lesions. To this day, I think the seizure was caused by MS. He wanted

> to

> watch me and see if any symptoms occurred other than the tingling I was

> getting in my face. (To this day he still doesn't believe my

> breakthrough

> seizures are caused by the MS or medication). Around this time I was

> also

> having other symptoms, and started a six month process that ended up with

> me

> being diagnosed with fibromyalgia.

>

> In May of 2008, I started having the classic symptoms in my left hand,

> tingling, numbness, weakness in both hands, pain in my arm. The

> neurologist

> ordered an MRI, and sure enough there were more lesions, and they were

> enhanced. He wanted the spinal tap to be sure, although he was pretty

> sure

> that I had RRMS, as he could find no other explanation. Of course, the

> spinal tap came back positive. I was immediately started on Avonex. He

> wasn't concerned about the Avonex causing seizures, but I was. Three

> days

> after my first injection, I had another seizure. Two minutes after

> getting

> out of the car. I ended up basically breaking my butt, but it took three

> months to get a confirmation of that. Neuro still wouldn't admit that it

> was from the meds or the MS, but he added another medication to control

> them. I made the decision then that I would NEVER drive again.

>

> On Avonex, the " flu like side effects " were severe, keeping me down half

> the

> week. Six months later, I had another flare, and two more seizures,

> about a

> week apart - one being the morning after Thanksgiving. This was my first

> time having a full month long flare. The makers of Avonex seemed to

> think

> that the reason my reaction to the Avonex was so severe, and hadn't gone

> away yet was my fibromyalgia. I wasn't so sure, but I continued with the

> medication. Finally in May of 2009, my neurologist said maybe we should

> do

> a medication break to see if your body rebounds from being sick so much

> of

> this time, because the fevers were running most of the week. I took the

> medication break, but I also asked to see an MS specialist. That doctor

> referred only to a hospital that didn't have a clinic to take Medicaid,

> so I

> had to find my own at another university in St. Louis. Luckily, they had

> a

> nationally recognized MS clinic, and the entire neurology deparment was

> considered the best in the country. ( hospital/Washington

> University).

>

> I went to see my new doc, and after viewing my MRI and spinal tap

> results,

> and I discussed my seemingly out of line reactions with Avonex (and my

> seizures) she made the decision to change me to Copaxone. About a month

> after the change, I did have another flare, brought on by stress, as my

> father was in a coma after an aneurysm surgery, but it's my understanding

> that it takes Copaxone a while to get fully working. That flare was a

> month

> long as well, and the second time I was on oral steriods (I've never been

> on

> IV steroids, thank goodness). Once that was past, Copaxone worked well

> for

> me in the while I still had the day to day symptoms, I didn't have a

> flare

> from August of 2009 until January of this year.

>

> When I had my flare in January, it was a pretty standard flare, felt like

> I

> got hit by a truck, numbness in hands tingling in feet, tingling in my

> nose

> and chin, etc. By the time I was able to get into my doctor, the flare

> had

> pretty much ended, so there were no enhancements on the MRI, but the MRI

> did

> show four more lesions than five months previous, bringing my total up to

> 40. She put off changing my medication until there was more proof that

> the

> Copaxone had kind of tapped out.

>

> Well, she got it. On May 12, I started feeling like I got hit by a

> truck.

> May 13 I started with severe nerve pain in my skin. Sometimes its bad

> and

> sometimes its not so bad. At first, I didn't think it was a flare,

> because

> when I had a fever, I would get nerve pain, but that would only be like

> for

> a day. So far this has gone on for over three weeks. Once I got in to

> see

> her, she said it was pretty much a given that I need to change meds.

> Since

> I had seizures and such a strong reaction to the Avonex, she ruled out

> any

> interferon based medication. To be truthful, every flare I've had I've

> felt

> like I was close to having a seizure. Anyway, she entered me in to the

> Stratify II study, and pulled bloodwork to check my T cell count, and

> check

> if I have the JC virus in my blood system. Once that bloodwork comes

> back,

> I'm likely to get started on Tysabri.

>

> Tina

____________________________________________________________

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[Guest guest]

My 24 year old grandson is on Keppra for his seizures but I don't know if his is XR. I'm sorry you are in so much pain!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, June 5, 2011 1:19:59 PMSubject: Re: New Member Introduction

I'm currently on Trileptal and Keppra XR for my seizures. For my nerve pain, I'm on amitriptyline 100 mg, but with this flare, nothing is touching it, although if I wasn't taking the amitryptiline, I shudder to think of what the nerve pain would be like!

Tina

Welcome to the group Tina. I'm glad you found us but I'm sorry you have the need, as we always say:)So the makers of Avonex blamed your severe reactions to fibro? I have fibro and was on Avonex for 5 years and had very few side effects from the Avonex. I think some people just respond differently to interferons--some are okay with it and others have a horrible time of it. But what do I know? lol

What are you on for your seizures? Some of us take seizure meds for our nerve pain. But I'm sure you know that already. We have several members who have been on Tysabri or are currently. Kate was on Tysabri for several years and did very well on it. Now she is on copaxone.

You've been through the ringer,

haven't you?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: mserslife <mserslife >

Sent: Sun, June 5, 2011 12:26:17 PMSubject: New Member Introduction

Hi. My story goes back three and half years. I've had epilepsy since I was 16. I also have bipolar disorder. In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done. So I had an insurance change from United Health Care to Medicaid. Up until this time, I had been seizure free for about 10 years. Until October of 2007, when I had a seizure out of the blue. Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong. It showed white matter lesions. To this day, I think the seizure was caused by MS. He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face. (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication). Around this time I was also having other

symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm. The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced. He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation. Of course, the spinal tap came back positive. I was immediately started on Avonex. He wasn't concerned about the Avonex causing seizures, but I was. Three days after my first injection, I had another seizure. Two minutes after getting out of the car. I ended up basically breaking my butt, but it took three months to get a confirmation of that. Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them. I made the decision then that I would NEVER drive again.

On Avonex, the "flu like side effects" were severe, keeping me down half the week. Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving. This was my first time having a full month long flare. The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia. I wasn't so sure, but I continued with the medication. Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week. I took the medication break, but I also asked to see an MS specialist. That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis. Luckily, they had a nationally recognized MS

clinic, and the entire neurology deparment was considered the best in the country. ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone. About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working. That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness). Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc. By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40. She put off changing my medication until there was more proof that the Copaxone had kind of tapped out.

Well, she got it. On May 12, I started feeling like I got hit by a truck. May 13 I started with severe nerve pain in my skin. Sometimes its bad and sometimes its not so bad. At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day. So far this has gone on for over three weeks. Once I got in to see her, she said it was pretty much a given that I need to change meds. Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication. To be truthful, every flare I've had I've felt like I was close to having a seizure. Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system. Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina

[Guest guest]

Today is a particularly bad day.  This flare is very atypical of me.  It wasn't until the 23rd that my doctor made me realize it was a flare rather than some goofy symptom that had popped up.  I didn't have many of the usual signs for me.  And it ebbs and flows, and changes day to day.  One day it will be burning pain in my skin, another day it will be almost like tingling down my arms and legs, except it hurts.  Today is one of those burning pain days.  I've taken a pain pill and ibuprofen to hopefully help calm it down, but it's not worked so well.

Tina

 

hi Tina          

I also take amitriptyline 100mg nightly, for pain.  it does take the edge off my pain.

ann

 

Re: New Member Introduction

 

I'm currently on Trileptal and Keppra XR for my seizures.  For my nerve pain, I'm on amitriptyline 100 mg, but with this flare, nothing is touching it, although if I wasn't taking the amitryptiline, I shudder to think of what the nerve pain would be like!Tina

 

Welcome to the group Tina.  I'm glad you found us but I'm sorry you have the need, as we always say:)So the makers of Avonex blamed your severe reactions to fibro?  I have fibro and was on Avonex for 5 years and had very few side effects from the Avonex.  I think some people just respond differently to interferons--some are okay with it and others have a horrible time of it.  But what do I know?  lol  What are you on for your seizures?  Some of us take seizure meds for our nerve pain.  But I'm sure you know that already.  We have several members who have been on Tysabri or are currently.  Kate was on Tysabri for several years and did very well on it.  Now she is on copaxone.You've been through the ringer, haven't you?hugs

 

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

very interesting stuff~ thank you for sharing it Tina.Deesw IllinoisTo: mserslife <mserslife >Sent: Sun, June 5, 2011 2:26:17 PMSubject: New Member Introduction

Hi. My story goes back three and half years. I've had epilepsy since I was 16. I also have bipolar disorder. In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done. So I had an insurance change from United Health Care to Medicaid. Up until this time, I had been seizure free for about 10 years. Until October of 2007, when I had a seizure out of the blue. Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong. It showed white matter lesions. To this day, I think the seizure was caused by MS. He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face. (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication). Around this time I was also

having other symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm. The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced. He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation. Of course, the spinal tap came back positive. I was immediately started on Avonex. He wasn't concerned about the Avonex causing seizures, but I was. Three days after my first injection, I had another seizure. Two minutes after getting out of the car. I ended up basically breaking my butt, but it took three months to get a confirmation of that. Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them. I made the decision then that I would NEVER drive again.

On Avonex, the "flu like side effects" were severe, keeping me down half the week. Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving. This was my first time having a full month long flare. The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia. I wasn't so sure, but I continued with the medication. Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week. I took the medication break, but I also asked to see an MS specialist. That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis. Luckily, they had a nationally recognized MS

clinic, and the entire neurology deparment was considered the best in the country. ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone. About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working. That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness). Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc. By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40. She put off changing my medication until there was more proof that the Copaxone had kind of tapped out.

Well, she got it. On May 12, I started feeling like I got hit by a truck. May 13 I started with severe nerve pain in my skin. Sometimes its bad and sometimes its not so bad. At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day. So far this has gone on for over three weeks. Once I got in to see her, she said it was pretty much a given that I need to change meds. Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication. To be truthful, every flare I've had I've felt like I was close to having a seizure. Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system. Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina

[Guest guest]

Hi Tina, Welcome to the group. Margaret A. CoteTo: MSersLife Sent: Sun, June 5, 2011 3:19:59 PMSubject: Re: New Member Introduction

I'm currently on Trileptal and Keppra XR for my seizures. For my nerve pain, I'm on amitriptyline 100 mg, but with this flare, nothing is touching it, although if I wasn't taking the amitryptiline, I shudder to think of what the nerve pain would be like!

Tina

Welcome to the group Tina. I'm glad you found us but I'm sorry you have the need, as we always say:)So the makers of Avonex blamed your severe reactions to fibro? I have fibro and was on Avonex for 5 years and had very few side effects from the Avonex. I think some people just respond differently to interferons--some are okay with it and others have a horrible time of it. But what do I know? lol

What are you on for your seizures? Some of us take seizure meds for our nerve pain. But I'm sure you know that already. We have several members who have been on Tysabri or are currently. Kate was on Tysabri for several years and did very well on it. Now she is on copaxone.

You've been through the ringer,

haven't you?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

To: mserslife <mserslife >

Sent: Sun, June 5, 2011 12:26:17 PMSubject: New Member Introduction

Hi. My story goes back three and half years. I've had epilepsy since I was 16. I also have bipolar disorder. In 2007, I was fired from my job because I was having a nervous breakdown, couldn't concentrate, so I had trouble getting the work done. So I had an insurance change from United Health Care to Medicaid. Up until this time, I had been seizure free for about 10 years. Until October of 2007, when I had a seizure out of the blue. Once I got in with my new neurologist, he didn't think it was a big deal, but ordered an MRI to make sure nothing was wrong. It showed white matter lesions. To this day, I think the seizure was caused by MS. He wanted to watch me and see if any symptoms occurred other than the tingling I was getting in my face. (To this day he still doesn't believe my breakthrough seizures are caused by the MS or medication). Around this time I was also having other

symptoms, and started a six month process that ended up with me being diagnosed with fibromyalgia.

In May of 2008, I started having the classic symptoms in my left hand, tingling, numbness, weakness in both hands, pain in my arm. The neurologist ordered an MRI, and sure enough there were more lesions, and they were enhanced. He wanted the spinal tap to be sure, although he was pretty sure that I had RRMS, as he could find no other explanation. Of course, the spinal tap came back positive. I was immediately started on Avonex. He wasn't concerned about the Avonex causing seizures, but I was. Three days after my first injection, I had another seizure. Two minutes after getting out of the car. I ended up basically breaking my butt, but it took three months to get a confirmation of that. Neuro still wouldn't admit that it was from the meds or the MS, but he added another medication to control them. I made the decision then that I would NEVER drive again.

On Avonex, the "flu like side effects" were severe, keeping me down half the week. Six months later, I had another flare, and two more seizures, about a week apart - one being the morning after Thanksgiving. This was my first time having a full month long flare. The makers of Avonex seemed to think that the reason my reaction to the Avonex was so severe, and hadn't gone away yet was my fibromyalgia. I wasn't so sure, but I continued with the medication. Finally in May of 2009, my neurologist said maybe we should do a medication break to see if your body rebounds from being sick so much of this time, because the fevers were running most of the week. I took the medication break, but I also asked to see an MS specialist. That doctor referred only to a hospital that didn't have a clinic to take Medicaid, so I had to find my own at another university in St. Louis. Luckily, they had a nationally recognized MS

clinic, and the entire neurology deparment was considered the best in the country. ( hospital/Washington University).

I went to see my new doc, and after viewing my MRI and spinal tap results, and I discussed my seemingly out of line reactions with Avonex (and my seizures) she made the decision to change me to Copaxone. About a month after the change, I did have another flare, brought on by stress, as my father was in a coma after an aneurysm surgery, but it's my understanding that it takes Copaxone a while to get fully working. That flare was a month long as well, and the second time I was on oral steriods (I've never been on IV steroids, thank goodness). Once that was past, Copaxone worked well for me in the while I still had the day to day symptoms, I didn't have a flare from August of 2009 until January of this year.

When I had my flare in January, it was a pretty standard flare, felt like I got hit by a truck, numbness in hands tingling in feet, tingling in my nose and chin, etc. By the time I was able to get into my doctor, the flare had pretty much ended, so there were no enhancements on the MRI, but the MRI did show four more lesions than five months previous, bringing my total up to 40. She put off changing my medication until there was more proof that the Copaxone had kind of tapped out.

Well, she got it. On May 12, I started feeling like I got hit by a truck. May 13 I started with severe nerve pain in my skin. Sometimes its bad and sometimes its not so bad. At first, I didn't think it was a flare, because when I had a fever, I would get nerve pain, but that would only be like for a day. So far this has gone on for over three weeks. Once I got in to see her, she said it was pretty much a given that I need to change meds. Since I had seizures and such a strong reaction to the Avonex, she ruled out any interferon based medication. To be truthful, every flare I've had I've felt like I was close to having a seizure. Anyway, she entered me in to the Stratify II study, and pulled bloodwork to check my T cell count, and check if I have the JC virus in my blood system. Once that bloodwork comes back, I'm likely to get started on Tysabri.

Tina