I wanted to post a quote from Gavin Giovannoni, who is a professor of neurology at Barts.
“If we take the approach of rheumatologists who treat aggressively and early, then in 15 years we could see wheelchairs as very rare,” he says. “But we have to act now.”
This is from the Times supplement on MS on Monday. I saw it mentioned on here but didn’t actually buy it, a friend posted it through my door. I thought it would be full of the same old stuff that I already know but actually I thought it was really interesting. There was lots of stuff in it about the newest treatments, the trials on drugs for SPMS and the postcode lottery for getting treatment at all. It said stuff that I really believe about getting the best drugs as early as possible. I’m going to post the list of top neurologists who are quoted in the supplement so people will know who they should be getting their GP to refer them to.
I have alway said and belive that everybody diagnosed should be put on DMDs or some form of treatment immediately for aleast 12ms an then see how they go on.
Perhaps I wouldn’t be in a wheelchair now if this had happened.
People with 2SPMS are forgotten,
I know there are trials but its too little.
When the trials came out I looked at the criteria for applying and didn’t fit any, 1
I couldn’t walk the required distance, 2. I was too old, I was 59 at the time.
Hello Ronin I’m sorry you feel bitter but glad it’s helped to get things off your chest. I could send you a positive message but I don’t think I dare Hope you have a peaceful day xx
Hi Ronin I agree with you one hundred percent. I went straight to dx of SPMS and have had no treatment, other than an ineffective course of IV steroids, my neurologist has discharged me because there’s no point seeing me any mire as he can’t do anything for me. I also interpret this as WONT. I believe they could have tried dmds it might just have changed my life. I too might not be dependent on a wheelchair and my husband. Instead I’ve just been chucked on the scrap heap and been left to get on with it the best I can, my rant over too!
I think everyone diagnosed with MS should be offered a DMD without this silly rule about having to have 2 relapses within a certain time span. Lesions can be forming without visible symptoms and damage is occurring in the body.
I can think of a couple of MSers who have progressed because they haven’t been on drugs but I think they may not have progressed if they had had the benefit of DMDs early on. It’s really surprising how few of the people at my local branch have been on any DMDs.
I count myself as lucky - I was diagnosed quickly due to two relapses within a short time and my symptoms were severe and disabling. I was immediately referred to a prescribing hospital where my care has been excellent.
You are having it rough at the moment Ronin. You must have been feeling pretty unwell, hope your on the mend now. Antibiotics are a wonderful thing. Sorry to hear about your mum…it’s sad for the family to go through this. The early stages for the sufferer must be horrible. Good news about your partner:-) Happy to be a buddy…what is one :-/…that’s a confused face. PS; sorry Sewingchick, I won’t write anymore on this thread
I completely agree with this thinking, for all msers a strong attack from the get go seems the only way forward. However this has to drip down into the thinking of the ‘not so wonderful’ neurologists, that most of us see. This may take time and fundamental change in thinking.
[/quote] Disease Modifying Drug. If you go to the top of the of Everyday living page one of the sticky topics gives you a list of abbreviations. Good luck with them I till get confused Jan
Hope you have a peaceful day xx