Posted: Sat Jul 15, 2006 10:23 am
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Has it ever crossed your mind, that as the spouse of a SPMS person who has suffered from MS for over 35 years, I might be trying to learn some information on how to help my wife and as well, offer suggestions to people who are new to the disease?You can't say I didn't try. I just can't for the life of me understand why a grown man without MS would log on everyday to a range of MS websites. MS isn't a hobby and it's not an interesting subject. It's a vile disease and most of us with it log on to find out about reseach, drugs in the pipeline etc. I can't see what your motivation is.
I have never interfered with anyone who has wanted to try Tysabri. If a MS patient wants to try the drug, nothing that I can ever say will prevent he/she from doing so.It is being reintroduced and it would have been thoughtful to let the dust settle and let those with the disease decide whether to try it or not.
Of course they are in business to make money and I have stated as much many times. There is nothing wrong with trying to make money. I simply don't like their ethics and how they do business when it comes to their MS medications.Biogen and Elan are commercial companies and make money from drugs which they develop - they are not charities or Government. They make all sorts of drugs e.g. for cancer and if they prolong life or reduce pain the drugs are worth every penny.
I didn't realize that you were "keeping score" between Tysabri and the CRABs. I've commented on all those drugs (albeit not as often as Tysabri) on this forum and others. I've also commented on other MS issues, both here and on the other forums...ie: scooter choices, fatigue, family attitudes towards the MS patient, disabled parking permits, insurance issues, acupuncture, exercise therapy, spousal relationship ...I could go on for a long time.It doesn't take a genius to look at your postings on the different drugs - hardly any for Copaxone, Avonex, Rebif, Betaferon or Novantrone. Yet you have posted hundreds about Tysabri. Why don't you post stuff under general discussion if you have an interest in MS generally?
I've already partially answered this above. As well, I spend a large part of my day at home (home business) and mostly because I provide around the clock care for my wife as well as running the household. I don't live what one would call a normal life for a person my age because of the home care provider situation. So I have had to adjust and visiting the MS forums to learn information and assist others is part of this adjustment. I trust this answers the question that you have asked me many, many times!I think you have to ask yourself what motivates you to come on these sites. I curse the day I was dx with this disease and the hundred of hours spent on this site - when I think of all the hobbies I can no longer do such as running and scuba diving. You have a choice. What fun / entertainment can you get - none of us with MS want to be here.
I didn't write that report Ian.... MS research experts did and I think it's only fair that people be told about it. If you have a beef about it, then I suggest that you direct it against Dr. Munari who was the author. If you only read what Teva has to say about Copaxone then you are only getting one side of the story. A potential Copaxone user should have the opportunity to hear both sides.always quote the Cochrane report that said Copaxone was next to useless). Fortunately you'll never have to use these drugs but you sow seeds of doubt in the minds of those who do.
Your comparison is totally off base, Ian!!My cousin died of breast cancer but I would not contemplate going on a breast cancer website and posting that the drugs are useless and the drugs companies are only interested in money and not patients. I think this view is totally unfair if you actually know some of the dedicated researchers and scientists.
So it's OK for you to post your disagreement with me but I shouldn't have the opportunity to do the same?Please don't pull out loads of quotes from this post and respond to them.
And if my wife didn't have MS for the past 35+ years, you wouldn't see me here either. But you have MS and so does my wife so we are both here....and don't for one second believe that I look at this as a hobby...it is anything but!If I didn't have MS I wouldn't go near these websites. I certainly wouldn't go on them for a hobby. If they ever come up with a cure I'll be glad to see these sites shut down for good. If I was in your shoes, I'd get myself a more interesting hobby.
You are absolutely right and I offer my apologies for subjecting the readers to yet another spat between Ian and myself. The last time this happened we indeed did take it offline and settled the problem. Should have done the same this time as well.Mary wrote:Perhaps a new thread called Pissing Matches is in order? Geez, take it offline, go to personal messages...I wanted to read about Tysabri but instead spent ten minutes trying to get through the Harry and Ian show to see if there was anything new or interesting about Tysabri...
When you have an EDSS scale at 5.0 or lower, then you are not considered as having severe MS. When discussion centers around a more severe level of the disease, it is usually associated with those who have SPMS and are progressing fairly quickly. That kind of patient has not been tested with Tysabri and the drug is not recommended for that kind of situation. That doesn't mean that SPMS patients who have not had a good response to other medications won't use Tysabri...they likely will try it but there is no evidence or data that shows Tysabri is effective for that kind of scenario.Odd discussion here, a few scare off links as if nobody here can read and what is with you and Tysabri Harry, some people in the trial had mild and some more severe rrms, just like the CRABS trials:
You know, Gary is about a 6.5 on the scale and his disability is pretty darn bad. If it was a 4, it would still interfere GREATLY in his everyday life. If he was ONLY blind, it would be severe. If he ONLY had walking difficulties, if he ONLY had to be catherized daily, etc. I think you get the point. And I believe the above would put him in the 5.0 bracket or lower. I guess it just depends on where you put the word severe!Kurtzke Expanded Disability Status Scale (EDSS) score between 0 and 5.0.
How very, very true!You know, Gary is about a 6.5 on the scale and his disability is pretty darn bad. If it was a 4, it would still interfere GREATLY in his everyday life. If he was ONLY blind, it would be severe. If he ONLY had walking difficulties, if he ONLY had to be catherized daily, etc. I think you get the point. And I believe the above would put him in the 5.0 bracket or lower. I guess it just depends on where you put the word severe!
Go to this link...it has a good explanation of the EDSS scale.amelia wrote:Sorry Harry, out of my lack of knowledge I did not know there were more than 1 EDSS scale