Oh that’s interesting
@Hutan to hear a specific example of one person experiencing that particular misdiagnosis going uncorrected over decades.
That’s a huge time span, a lifetime in which to be told by drs that “there is no treatment” if she was lucky which almost certainly she wasn’t, and would also have been treated to the ‘there is no illness either’ model so popular across the medical globe.
MS was one diagnosis my drs briefly considered-very causally and without much thought of investigation- at that time I was pushing for investigation of some new/worsening symptoms, back then I didn’t really understand why an MS diagnosis was the one that Drs were willing to contemplate over more common conditions that they were
laughing me out of the office for eg RA.
I knew nothing about the extent to which the disease MS can vary in presentation. I knew two men with very aggressive progressive rapid types. This is quite different, I think in my limited knowledge, to the more ME like symptoms that a slow progression or remitting MS could be confused for.
@Frenchguy I wonder if the larger long-COVID (Body Politic?) organisations might be able to put the word out for you, there are bound to be people with aggressive MS who developed LC perhaps even after acquiring Covid in hospital, getting treatment for anything makes any type of infection more difficult, so I can’t imagine you being alone on this one. LC of the ME like variety on top of MS would match your situation fairly well because of PEM. A shame Twitter is so much less functional now as that would have probably been the perfect place to get a lead on this. But I hear those LC Facebook groups are also useful in this regard.
I did speak to the MS UK society some years back and they were very kind and seemed to know a little bit more about ME than other organisations. They might be worth asking. Though often depends on who you get in office on any day with these enquiries.
This makes me think we need information pack’s specifically for this kind of thing at a bare minimum. At this stage we couldn’t have actual medical guidance but we could have patient experience information. Like when people fill out those questionnaires for research and charities on relapse and improvement rates for particular interventions.
I feel very angry on your and everyone else’s behalf’s that even the bare minimum is so often out of reach thanks to the dominant obstructionist BPS paradigm and the proudly touted prejudice and in-curiosity of the majority of our Drs.
This struggle for information is the last thing you need while so very sick. The injustice is indescribable.
Still minority of good researchers and clinicians will have something by way of information between them to help in some way manage even slightly better. Hopefully someone can help you discover what ever information exists as soon as possible.
Je vous souhaite bonne chance
