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Oneinthree's avatar

This is an interesting topic and i imagine that the treatment of flares or relapses is subject to the postcode lottery, as with everything else with this disease. My own (northern) experience is that I experience an exacerbation in symptoms, email the nurse so that there is a record and she notes it on file. I already know that i wont be offered steroids unless the relapse progressive beyond initial sensory disturbance. I wont be offered a scan to see whats going on and potential alter treatment strategies. I have become quite defeatist about the whole thing. Instead i will probably pursue a scan privately on a better quality MRI scanner in an attempt to bolster my case for a change in treatment but if this does not show new lesions then the relapse will be dismissed - they probably think i am making it up! its a sad situation really

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JoeY's avatar

I have ppms. H63D pair of genes DNA, caused iron overload years back.

Now neuromuscular weakness in chest, causing need for oxygen 24*7.

A blood Test was done by Neurologist, so on top of MS,

Multifocal Motor Neuropathy (MMN) was found 0.4% of 100,000 people diagnosed.

IVIGi s only therapy in USA. Doing this for a week.

But can not find in last two years of being on life support, on how to repair, strengthen lung muscles. My PFT is at 10%

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