Guest guest Posted May 24, 2011 Report Share Posted May 24, 2011 Dee, I don't take any ms meds at all. If I wanted to take any of those drugs my primary care would give them to me, I'm sure. Yep, that jailbird neuro was a winner for sure. lolIt's good your old neuro emailed you back! How cool Let me know what you decide and if the insurance will cover.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: Tue, May 24, 2011 4:49:00 PMSubject: Re: neuro appt today that is incredible! so do you take ms meds even though you don't currently have a neuro? My previous neuro emailed me back~ she said she would be glad to take me on as a patient again or even give a second opinion on things...caviot is that she is moving to a different hospital so I have to see if my insurance referral even deals with this particular hospital and ask about moving. It is 45 min drive but that is only about 15 more than where she is now. I always left her in a positive frame of mind, I leave my current one with nothing but negative. ugh. so much work to move drs. but will be worth it if I can feel better about my care. thanks a bunch!DeeTo: MSersLife Sent: Tue, May 24, 2011 12:44:06 PMSubject: Re: neuro appt today You are welcome, Dee. We all want our neuros to be on the top of their game, don't we? Look who's talking... I don't even have a neuro. lol The closest neuro is a three hour drive one way. The last neuro I had lost his license for getting 'frisky' with female patients. He was a lousy neuro anyway, so no great loss:) 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: Tue, May 24, 2011 8:57:03 AMSubject: Re: neuro appt today wow, that is amazing. I am getting more disappointed by this neuro, might request everything go back over to my previous neurologist. from what I see in some of the info on your link TM is only related to MS in that it is a neurological issue...not a variation. grrr. unbelievable. thank you for your help.To: MSersLife Sent: Tue, May 24, 2011 10:46:22 AMSubject: Re: neuro appt today I'll let you know when I hear from him. BTW, he is paralyzed from TM and uses a straw to type. He is a major inspiration! 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: Tue, May 24, 2011 8:43:45 AMSubject: Re: neuro appt today thank you, I am just not comfortable with this neuro yet...guess I'm testing him a bit to see what his attitude is about things...what you find will help in this area for me. thank so much~look forward to hearing what you find.DeeTo: MSersLife Sent: Tue, May 24, 2011 10:22:13 AMSubject: Re: neuro appt today Hi Dee....When I was first diagnosed I had a lot of doubt. I keep thinking perhaps my symptoms weren't real and were all in my head. I had a LOT of doubt. Finally one day it dawned on me that it WAS all in my head and I had the MRI films to prove it. lolI have never, ever heard anyone say TM is a form of MS. And the treatments for MS are not used for TM. I just wrote to one of my friends at the Transverse Myelitis Association and asked him. I'll let you know what he says.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: Mon, May 23, 2011 6:15:07 PMSubject: neuro appt today This is the first one I've had since starting copaxone. I wrote my questions down and managed to get reasonable answers except over the reason he didn't order a brain mri as well as the t & c spine. Copaxone is neither an IM or IS apparently, based on the definition of either. My interpretation is it merely runs interference for the immune system. I just couldn't get a clear answer as to whether it was an IM or IS in the things I was reading so I figured I'd ask him. Asked about TM verses MS and he said it is a variety of MS that uses the same treatments available to MS patients, that TM focuses in on the spine. He mentioned another variety that is a progression of the TM that contains a "d" word that I cannot recall, in which the disorder expands to the optical region in addition to the spine. Neither of these "varieties" include occurrences in the brain, which is where MS comes in. Granted, this is not the whole story, only an interpretation of an abstract the neurologist fed me in an effort likely to get me to let my inquiries go. I still don't care for my neuro but hey, nothing new is going on and I don't have to see him until next spring unless something comes up before then. Of course I was somewhat poo-poo'd about my 'side effects' of feeling run down, particularly the spasming at the collar area of my throat being related to the copaxone. Nobody seems to understand that things that are meant to shore up one's immunities tend to have the opposite effect on me. I just get a blank look~ oh well. Hoping things settle down once I've been on this a while. I'm still trying to find that door that will open to tell me it was all a mistake and I was misdx'd. denial, it is a powerful thing. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2011 Report Share Posted May 24, 2011 wow Sharon, guess I assumed everyone was taking something...what is your progression/symptoms? Imagine you've said but have you taken any of them? Not sure why I'd assume that because I was off meds for a year and a half after 6 yrs of Avonex before entering denial phase II and stopping that.wow, just drew a blank. am up from coughing from this STUPID cold I've picked up since Saturday. what a freakin' drag. I am so exhausted from coughing and tonight my ears were squishing and hurting while laying down so I'm up again. Perhaps tomorrow will bring a clearer day lol. night!DeeTo: MSersLife Sent: Tue, May 24, 2011 10:26:55 PMSubject: Re: neuro appt today Dee, I don't take any ms meds at all. If I wanted to take any of those drugs my primary care would give them to me, I'm sure. Yep, that jailbird neuro was a winner for sure. lolIt's good your old neuro emailed you back! How cool Let me know what you decide and if the insurance will cover.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: Tue, May 24, 2011 4:49:00 PMSubject: Re: neuro appt today that is incredible! so do you take ms meds even though you don't currently have a neuro? My previous neuro emailed me back~ she said she would be glad to take me on as a patient again or even give a second opinion on things...caviot is that she is moving to a different hospital so I have to see if my insurance referral even deals with this particular hospital and ask about moving. It is 45 min drive but that is only about 15 more than where she is now. I always left her in a positive frame of mind, I leave my current one with nothing but negative. ugh. so much work to move drs. but will be worth it if I can feel better about my care. thanks a bunch!DeeTo: MSersLife Sent: Tue, May 24, 2011 12:44:06 PMSubject: Re: neuro appt today You are welcome, Dee. We all want our neuros to be on the top of their game, don't we? Look who's talking... I don't even have a neuro. lol The closest neuro is a three hour drive one way. The last neuro I had lost his license for getting 'frisky' with female patients. He was a lousy neuro anyway, so no great loss:) 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: Tue, May 24, 2011 8:57:03 AMSubject: Re: neuro appt today wow, that is amazing. I am getting more disappointed by this neuro, might request everything go back over to my previous neurologist. from what I see in some of the info on your link TM is only related to MS in that it is a neurological issue...not a variation. grrr. unbelievable. thank you for your help.To: MSersLife Sent: Tue, May 24, 2011 10:46:22 AMSubject: Re: neuro appt today I'll let you know when I hear from him. BTW, he is paralyzed from TM and uses a straw to type. He is a major inspiration! 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: Tue, May 24, 2011 8:43:45 AMSubject: Re: neuro appt today thank you, I am just not comfortable with this neuro yet...guess I'm testing him a bit to see what his attitude is about things...what you find will help in this area for me. thank so much~look forward to hearing what you find.DeeTo: MSersLife Sent: Tue, May 24, 2011 10:22:13 AMSubject: Re: neuro appt today Hi Dee....When I was first diagnosed I had a lot of doubt. I keep thinking perhaps my symptoms weren't real and were all in my head. I had a LOT of doubt. Finally one day it dawned on me that it WAS all in my head and I had the MRI films to prove it. lolI have never, ever heard anyone say TM is a form of MS. And the treatments for MS are not used for TM. I just wrote to one of my friends at the Transverse Myelitis Association and asked him. I'll let you know what he says.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: Mon, May 23, 2011 6:15:07 PMSubject: neuro appt today This is the first one I've had since starting copaxone. I wrote my questions down and managed to get reasonable answers except over the reason he didn't order a brain mri as well as the t & c spine. Copaxone is neither an IM or IS apparently, based on the definition of either. My interpretation is it merely runs interference for the immune system. I just couldn't get a clear answer as to whether it was an IM or IS in the things I was reading so I figured I'd ask him. Asked about TM verses MS and he said it is a variety of MS that uses the same treatments available to MS patients, that TM focuses in on the spine. He mentioned another variety that is a progression of the TM that contains a "d" word that I cannot recall, in which the disorder expands to the optical region in addition to the spine. Neither of these "varieties" include occurrences in the brain, which is where MS comes in. Granted, this is not the whole story, only an interpretation of an abstract the neurologist fed me in an effort likely to get me to let my inquiries go. I still don't care for my neuro but hey, nothing new is going on and I don't have to see him until next spring unless something comes up before then. Of course I was somewhat poo-poo'd about my 'side effects' of feeling run down, particularly the spasming at the collar area of my throat being related to the copaxone. Nobody seems to understand that things that are meant to shore up one's immunities tend to have the opposite effect on me. I just get a blank look~ oh well. Hoping things settle down once I've been on this a while. I'm still trying to find that door that will open to tell me it was all a mistake and I was misdx'd. denial, it is a powerful thing. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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