What has the asynchronous progressive MS hypothesis got to do with MS pain? #ClinicSpeak #MSBlog #MSResearch
In response to the following question on my ClinicSpeak post from this morning: 'Prof G, I have early MS. Is it inevitable that I will develop pain? The thought of having to live with pain worries me a lot.'
"You may be interested in the results of a survey we did way on disabling symptoms in MS back in May 2012. You can see that pain was ranked fourth and was reported by 42% of MSers. This figure increases with disease duration, and disability, so by the time you are needing a wheelchair the figure is closer to 85%. The reason for the link with disability is that the same processes that cause MS disability that are causing myelopathic pain; i.e. disease activity and damage to the nervous system. Therefore the best way to prevent yourself developing MS-related pain is to make sure you are on early effective treatment to prevent, or delay, the onset of clinically progressive MS."
"Please note I have started using the term clinically progressive, because all the evidence shows that in the majority of MSers, MS is progressive from the outset. The reason why you don't see it clinically is because our outcome measures don't pick it up early on and the reserve capacity that is intrinsic to the nervous system copes with the damage. However, once the reserve capacity is exhausted you present with clinical progressive MS. This applies to both primary and secondary progressive MS. Please note that different functional system progressive at different rates; my so called asynchronous progressive MS hypothesis. If you are progressing in one functional system it does not mean you have entered, or will enter, the progressive phase in other systems; effective DMTs may prevent or delay this from happening. This is why I am pushing for a rethink of the way we do progressive trials and to focus on the systems that have yet entered the clinically progressive phase, i.e. they still have reserve capacity. If we shift our focus to protecting these systems we may get the much needed DMTs for people with SPMS and PPMS. Up until now all progressive trials have focused on mobility using the EDSS. Is it time for a change? I say definitely!"
Labels: asynchronous progressive MS hypothesis, ClinicSpeak, Pain