I saw my neuro today. He confirmed that Ocrevus does not reverse existing symptoms. He said that some people have reported improvements.
Botox injections are only effective for local spasticity. They would actually make general (diffused) spasticity worse.
That is good to know about botox
I asked because I read your Botox post.
I don't take Ocrevus so I did't know about that. I knew about botox . When my dr first asked me if I wanted it told her no but it was because I don't do needles and it's a bacteria At this point in my life I need more than a temp fix
None of the MS drugs will reverse any MS symptoms. Any symptom improvements that happen are due to your body managing to do some "repairs" to the damaged areas where nerves have been demyelinated. This is why there are increasing numbers of neuros who believe MS treatments should be started ASAP after diagnosis and with the most effective drugs i.e. get the disease under control as far as possible before too much irreparable damage has been done - in other words while you still have some "reserve capacity" in the damaged areas. Your body has some ability to repair damaged myelin but once there is too much damage the repair mechanisms are much less successful. This is why some people can have a lot of symptoms during and after a relapse, but can then (if they are lucky) recover most of their function back again. However, each time damage is done during a relapse there is much less chance of your body's repair efforts being successful.
Agree. That’s what the research states. Therefore, I’ve had great repair since Ocrevus. 👍
I thought the myelin repair was not yet possible, and pharmaceuticals are still working on it?
Yes, there are efforts being made to find drugs which will stimulate the repair processes, but no definitely effective drug/s has been found yet. The search also continues for drugs which will be neuro-protective i.e. drugs which will help prevent damage occurring in the first place. And, as I said above: "Your body has some ability to repair damaged myelin but once there is too much damage the repair mechanisms are much less successful." Your body is able to repair broken bones, torn muscles and so on, and it can also do some myelin repairs, but it can't necessarily make things "like new" again. Think about a small dent in the body-work of your car - it can be patched with bog and repainted and look like new again, but if you keep getting damage in the same place the repairs eventually become very poor quality and end up not even worth attempting. This is sort of what happens with the myelin coating on your nerves when it is damaged by MS, and why it is so important if you have RRMS to prevent relapses.
Another thing that happens is that to some extent your brain can build new pathways around damaged areas - this is called neuroplasticity. These new pathways can help compensate for the damaged areas but may not give a person back their full function. This is partly why exercise can be so important for people with MS - it can help build the new pathways. It's a bit like a permanent detour being built around a damaged and un-repairable piece of road - it can take a while to build the detour before it is fully operational, however there may also be a permanently lower speed limit on the detour!!
abc.net.au/radionational/pr...
One of the best things you can do for yourself is to become properly informed about your MS, but you don't need to become an expert - just gain a reasonable level of understanding as you will be living with MS for a very long time! However, don't rely on Facebook and similar places because far too many of the "contributors" haven't got a clue about what they are talking about and what they post just perpetuates misinformation - and some of it is just plain misleading or even downright dangerous to your health. There are numerous MS Society type websites around the world, and they generally have good information in language that you don't need to be a scientist to understand. Watch out for the "I cured my MS by eating a pink elephant", or "standing on your head for 4 hours every day will cure your MS" types of websites - they are full of B....s... - and "miracle cures" don't exist so don't get fooled by the scammers and rip-off merchants who inhabit the internet and prey on the desperation and hopes of people with chronic illnesses. Here's a few reliable starter sites for you - and it's worth looking at more than one because they all have different strengths and weaknesses.
I totally agree with this post...very professionally written and well-informed....sounds like you have medical experience, no? The only thing I didn’t know about was the “pink elephants”...so, I think I’ll take those off my diet!! 😂 Great post and thank you for all your helpful links and meticulous research Frances_B...😎👍
I was given a stern NO from my dr. about trying botox before I got my pump. With the explanation of how it could or would affect the muscles around where it's injected.
Neuro visit went well!
Things that make spasticity worse
Ocrevus +10 months, new blood test, neuro visit tomorrow
