On the NHS, we don’t treat MS or MS relapses with IVIg. However we occasionally use plasma exchange to treat severe or catastrophic relapses that fail to respond to high-dose steroids.
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
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
We are also beginning to use neurofilament measurements to diagnose biochemical relapses. Interesting?
In the blood? is this specific to Barts or something that can be requested of other HCP?
We try and assess all relapses to document changes in the notes. However, during the COVID-19 this was not always possible.
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%