Question:
In article <381dd…@news.deniz.com>, David Goldenberg – Hide quoted text — Show quoted text -<david.goldenb…@demgroup.com> wrote: > Dear Pam, > > You say there was no noticeable improvement on the Betaseron, but a > > decline since going on the Copaxone. It’s possible that the Betaseron > > might have been slowing the progression or at least helping her hold > > her own. You might want to consider switching to Avonex which, in some > > folks, seems to be more beneficial than the Beta. > Good suggestion re: Avonex. Perhaps for Shelley, Interferon is where it’s > at. Although she’s definitely progressive, it *seems* the Betaseron was > somewhat effective in slowing the rate of progression (not much, mind you, > but apparently better than the Copaxone). I’m curious if Copaxone sometimes > takes a few months to kick in. If not, and since there is no scientific > evidence (yet–I know there’s a study going on right now) that Copaxone is > effective for progressive MS, I think her maybe neuro should prescribe > Avonex.
Everyone’s different, Dave. There have been folks who have really been trashed by the interferons, and others for whom they seem to work very well. While I don’t know beans about Copaxone (other than it seems to be helping some folks), the decision to switch to Avonex hasta be made by you, Shelley and her neuro. – Hide quoted text — Show quoted text -> > Although Klonopin is in the benzodiazepine family, not all benzo’s are > > the same … different ones work for different people. I don’t have MS > > (my daughter does), but I did suffer from chronic anxiety for a while. > > They tried Ativan, Valium, Serax, Klonopin and probably a few others > > that I can’t remember. The Serax (Oxazepam) helped, but made me foggy > > all day, and very jumpy when it wore off. Xanax was the only thing > > that really helped. I *was* sleepy for the first few days, but found > > that by taking it only in the evening, I slept like a rock and the > > anxiety was under control during the day. It may just take trial and > > error to find out what helps your girlfriend. > I have had personal experience with benzos for panic disorder. For whatever > it’s worth, Klonopin’s been better than Xanax for me (although cognitive > therapy has been the best for me). You say you’ve been on Xanax. I’m > wondering what your dosage is. I know for many people, Xanax has that > "rebound anxiety" effect. Curious to know your take on that.
Again, everyone’s different. With Xanax, I was initially started on 0.5 mg tid, then switched to 0.5 to 1 mg od at bedtime. No rebound. Oh, and that’s a "was" not an "is". <g> I haven’t been on anything for about 2 years now. But ….. Ativan did zilch, zip, zero. It was like taking air. Serax seemed to have the rebound effect, and Klonopin was just plain wierd. If I was up, it pulled me down; if I was down, it lifted my spirits; if I was anxious, it calmed me; if I was calm it made me anxious. Valium evened me out and helped me sleep, but did nothing to control the panic attacks. Gotta add here that I was also going thru a slight depression and mild agoraphobia at the time too. (Still gots the agoraphobia, but manage to talk myself thru it most of the time.) > > You might also want to get your girlfriend hooked up with this > > newsgroup – or just stick around yourself. The folks here are very > > supportive and you’ll find a wealth of ideas, opinions and experiences. > Actually, we don’t have a computer at home. So for now, I’m using my work > computer to get on this newsgroup. But if anybody would like to communicate > with her, I’d definitely relay information both to and from her.
Just don’t get caught at work. <g> But it would definitely (IMHO) be beneficial for you to print up anything you find here that might be pertinent or of interest to her. And, tho I take the liberty of speaking for the group I don’t think they’d disagree, we’d be more than happy to answer any questions or concerns Shelley might have. > I noticed discussion on diet (gluten, etc.). Mainstream research doesn’t > mention this. Curious to know your take….
Oh boy. Can o’ worms. <g> My take …. Although mainstream medicine and research is beginning to recognize certain alternatives, there’s an awful lot of hype and BS out there, not to mention money making scams. There is another newsgroup (alt.support.mult-sclerosis.alternatives I think) where diet, etc. is discussed (I assume – I don’t subscribe) at length. In our forum, a number of folks *seem* to have been helped by special diets, supplements, bee stings, etc., just as many *seem* to have been helped by Betaseron, Avonex or Copaxone. If Shelley wants to try some of the diet theories, my advice would be borrow the specific diet book from the library. Read it and if it seems plausible and do-able, jot down the pertinent info and try it before running out and buying the book. Don’t wanna make waves here, but my own personal take (via my experience with Jennie, of course), is that a healthy, well balanced diet, some good vitamin supplements (go catalog [Puritan's Pride is good and cheap] or warehouse – stay away from MLM’s), as much exercise as is feasible, and a healthy life-style, coupled with mainstream medicine is the way to go. If that seems to be failing, then try just about anything you can find (check www.quackwatch.com for scams). Hell, if a woman with severe MS can skydive and suddenly get up and walk away, and another who’d been confined (sorry about my choice of words guys) to a wheelchair was struck by lightening (indirectly via metal support bars in her bathroom) and was able to give up her wheelchair …. well, anything is possible. Keep an open mind … just not so open your brains fall out. <bg> I hope you find some effective answers for Shelley, and tell her I said she’d better hang on to you. 
Hugs n prayers, P. — This message has been brought to you by: / / / ^~~^ / / ( ” ) / { } / " " YE OLDE BAT PamY – Spokesmom for Jennie who has MS
Response:
This is the place to be for support. Even if she cannot read the messages, she can go through you and get the warmth that comes from this group. They really are a swell bunch of people. I am not as bad as your girlfriend but quite similar in the pain, the anxiety, the lose of the use of your extremeties. I know its not easy at all to try to cope or begin to cope with what goes on. I have a psch that I see whenever I have something on my mind that no one else will listen to. You can tell someone something and they say they hear you but they don’t. Listen to your girlfriend and you must be very much in love. Try to keep her spirits up.
Response:
I posted this on the CLAMS board four days ago but got no response. Just found out about this site today. Here’s the message: Hello from Philly. My girlfriend was dxed w/ MS almost 7 years ago. Although her doc said she had RR, we never noticed any remissions. He now says it’s secondary progressive. She was on Betaseron for about five years with no noticeable improvement. The doc switched her to Copaxone, which she has been on for a few months. It would seem there’s been more of a decline since this point. She’s on SSDI now as her vision is shot (legally blind) and it is nearly impossible for her to walk. Previously, her worst symptom was pain, which is under control w/ many meds. She is starting to lose ability to move some extremities. And she has very little control over her bladder. What is more embarrassing for her is occasional–and unpredictable– (loose) bowel incontinence. Currently, her worst symptom is chronic anxiety. She just started seeing a psychiatrist affiliated with the Beck Institute of Cognitive Psychotherapy. He feels the anxiety is either a direct by-product of the MS or the manifestation of an adjustment disorder. He put her on 1 mg of Klonopin daily and has raised it to 4 mg, with minimal effect. She’s also been on Zoloft for nearly 4 weeks (I’m aware this can sometimes take at least 6 weeks to produce any effects). She’s an emotional wreck and hates to live, although not suicidal. She needs help. I’m doing the best I can. I’ve suggested a support group, as well as cognitive psycotherapy. Any suggestions? Thanks in advance. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
Response:
Dave <wrote in > She’s an emotional wreck and hates to live, although not suicidal. She > needs help. I’m doing the best I can. I’ve suggested a support group, > as well as cognitive psycotherapy. Any suggestions? Thanks in advance.
Bee stings has helped me, as well as others. Sounds wacky, but it works. John
Response:
[[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] In article <1266df56.4862b…@usw-ex0106-048.remarq.com>, Dave <david.goldenb…@demgroup.com.> wrote: > I posted this on the CLAMS board four days ago but got no response. > Just found out about this site today. Here’s the message: > Hello from Philly. > My girlfriend was dxed w/ MS almost 7 years ago. Although her doc said > she had RR, we never noticed any remissions. He now says it’s secondary > progressive. She was on Betaseron for about five years with no > noticeable improvement. The doc switched her to Copaxone, which she has > been on for a few months. It would seem there’s been more of a decline > since this point.
You say there was no noticeable improvement on the Betaseron, but a decline since going on the Copaxone. It’s possible that the Betaseron might have been slowing the progression or at least helping her hold her own. You might want to consider switching to Avonex which, in some folks, seems to be more beneficial than the Beta. > She’s on SSDI now as her vision is shot (legally blind) and it is > nearly impossible for her to walk. Previously, her worst symptom was > pain, which is under control w/ many meds. She is starting to lose > ability to move some extremities. And she has very little control over > her bladder. What is more embarrassing for her is occasional–and > unpredictable– (loose) bowel incontinence. Currently, her worst > symptom is chronic anxiety. She just started seeing a psychiatrist > affiliated with the Beck Institute of Cognitive Psychotherapy. He feels > the anxiety is either a direct by-product of the MS or the > manifestation of an adjustment disorder. He put her on 1 mg of Klonopin > daily and has raised it to 4 mg, with minimal effect. She’s also been > on Zoloft for nearly 4 weeks (I’m aware this can sometimes take at > least 6 weeks to produce any effects).
Although Klonopin is in the benzodiazepine family, not all benzo’s are the same … different ones work for different people. I don’t have MS (my daughter does), but I did suffer from chronic anxiety for a while. They tried Ativan, Valium, Serax, Klonopin and probably a few others that I can’t remember. The Serax (Oxazepam) helped, but made me foggy all day, and very jumpy when it wore off. Xanax was the only thing that really helped. I *was* sleepy for the first few days, but found that by taking it only in the evening, I slept like a rock and the anxiety was under control during the day. It may just take trial and error to find out what helps your girlfriend. > She’s an emotional wreck and hates to live, although not suicidal. She > needs help. I’m doing the best I can. I’ve suggested a support group, > as well as cognitive psycotherapy. Any suggestions? Thanks in advance.
You might also want to get your girlfriend hooked up with this newsgroup – or just stick around yourself. The folks here are very supportive and you’ll find a wealth of ideas, opinions and experiences. And I’d like to add that I think your girlfriend is very fortunate to have found you. Good luck to you both. Hugs n prayers, P. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ YE OLDE BAT / / / ^~~^ / / ( ” ) / { } / " " WISHES YOU ALL A HAPPY HALLOWEEN!!! Don’t let the hob-goblins getcha! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Response:
<< I’m curious if Copaxone sometimes takes a few months to kick in. >> my neuro and everything ive read say the same thing: it takes 10-12 months for copaxone to build up and become effective. that is why they switched me to betaseron after i had the exacerbation in june when i lost the vision in my left eye completely for two weeks. doc said he didnt want to wait 10-12 while the copaxone kiced in because that had been my third attack in 13 months. Be Well, Lisa to send email, remove 123 from my address. "Please explain to me the scientific nature of ‘The Whammy’" – Scully "The Daily News asks her for the dope. She says, ‘Man, the dope’s that there’s still hope.’"- Springsteen
Response:
Dear Pam, > You say there was no noticeable improvement on the Betaseron, but a > decline since going on the Copaxone. It’s possible that the Betaseron > might have been slowing the progression or at least helping her hold > her own. You might want to consider switching to Avonex which, in some > folks, seems to be more beneficial than the Beta.
Good suggestion re: Avonex. Perhaps for Shelley, Interferon is where it’s at. Although she’s definitely progressive, it *seems* the Betaseron was somewhat effective in slowing the rate of progression (not much, mind you, but apparently better than the Copaxone). I’m curious if Copaxone sometimes takes a few months to kick in. If not, and since there is no scientific evidence (yet–I know there’s a study going on right now) that Copaxone is effective for progressive MS, I think her maybe neuro should prescribe Avonex. > Although Klonopin is in the benzodiazepine family, not all benzo’s are > the same … different ones work for different people. I don’t have MS > (my daughter does), but I did suffer from chronic anxiety for a while. > They tried Ativan, Valium, Serax, Klonopin and probably a few others > that I can’t remember. The Serax (Oxazepam) helped, but made me foggy > all day, and very jumpy when it wore off. Xanax was the only thing > that really helped. I *was* sleepy for the first few days, but found > that by taking it only in the evening, I slept like a rock and the > anxiety was under control during the day. It may just take trial and > error to find out what helps your girlfriend.
I have had personal experience with benzos for panic disorder. For whatever it’s worth, Klonopin’s been better than Xanax for me (although cognitive therapy has been the best for me). You say you’ve been on Xanax. I’m wondering what your dosage is. I know for many people, Xanax has that "rebound anxiety" effect. Curious to know your take on that. > You might also want to get your girlfriend hooked up with this > newsgroup – or just stick around yourself. The folks here are very > supportive and you’ll find a wealth of ideas, opinions and experiences.
Actually, we don’t have a computer at home. So for now, I’m using my work computer to get on this newsgroup. But if anybody would like to communicate with her, I’d definitely relay information both to and from her. I noticed discussion on diet (gluten, etc.). Mainstream research doesn’t mention this. Curious to know your take…. Thanks for everything. — Regards, Dave Goldenberg
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