Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi All
I keep reading that this illness starts as Relapsing Remitting so I keep expecting some kind of remission..... only we don't have one yet. for 4 months everything was getting rapidly worse and David went from running 10km a week to walking around 2 blocks very slowly. min the last few weeks it seems to have stabilised (although he still gets random things every now and again which seem to be self limiting) he seems to be left with this limited mobility and memory issues can I expect some form of remission some time soon? or is it more likely that he has primary progressive?
as always thank you for sharing your wisdom
sharon
I keep reading that this illness starts as Relapsing Remitting so I keep expecting some kind of remission..... only we don't have one yet. for 4 months everything was getting rapidly worse and David went from running 10km a week to walking around 2 blocks very slowly. min the last few weeks it seems to have stabilised (although he still gets random things every now and again which seem to be self limiting) he seems to be left with this limited mobility and memory issues can I expect some form of remission some time soon? or is it more likely that he has primary progressive?
as always thank you for sharing your wisdom
sharon
Have you contacted your Neuro, has he been on Solumedrol, If he has not been, contact the Neuro and advise him that this relapse does not seem to have any recovery.
Best of luck
we don't have an official diagnosis largely due to a negative LP, both of the neuro's we have seen have been reluctant to label this so he is continuing on the diagnosis roundabout which is very frustrating when I can see massive decline. the MS guy in Sydney doesn't want a new MRI until February which will be 12 months since the last one as the last one showed no new lesions but its depressing just waiting for either improvement or more decline. he just had a neuropsychology assessment last week and cried all week because it made him realise how bad his memory is
Has your husband had visual evoke potential done?Mine was abnormal but I also have Brain AVM which I found out not long ago as well as other brain abnormalities per MRI. I was also told that I had extensive vascular disease of the brain along with white matter changes which can mimic MS .The name of it is neurodegenerative disease(s) of the brain, Sometimes etiology unknown. Stay strong. I'm thinking of you and your husband.
I can tell you from the PPMS perspective. . . it has been 5 years diagnosis (late 30s), and I am still getting around with a cane,short distances. Back five years ago I could walk faster than anyone, and would go really fast back and forth on foot (20 minutes each way) distances that I can't imagine doing now.
I was diagnosed almost immediately because I waited to get checked out, and at that point I had many lesions on my brain. PPMS is one usually diagnosed later on (late 30s onward), I don't think we get hit with optic neuritis for example, so it makes it tricky to diagnose.
Good luck getting answers!