I have been thinking lately (I’m always thinking lately!). So I had a bad episode in March (my first/only one) that got worse to the point that I could not walk, wash, cook, clean etc. Kids were living out of tin cans and I was hobbling around for weeks with a stick and an eye patch. Emergency neuro appointment where she highly suspected MS due to my sudden onset of symptoms. Did a few tests, found my left side (the side all my symptoms were on) to be weaker. Sent for an MRI which showed one small lesion on right side of the brain in brainstem area which would explain, exactly, my left-sided symptoms. Neuro said she would send me for a LP and VEP’s to add weight to a DX of MS.
So had LP and VEP and have a follow-up appointment next month.
What I want to know, or be prepared for, is what happens next?
I am the sort of person who needs to be prepared. I like to read. I read as much as I can.
If the LP shows elavated proteins or bands or whatever it is that people with MS have, that shows up on a LP test, will that then be a DX of MS? Or will it be classed as a CIS? If all this is being done to add weight to a DX then I don’t see the point. I think I should not bother and just wait and see if I have a relapse.
If the only way to be sure it is MS is for me to relapse then why all the tests? Why not just wait?
If LP is positive for MS and VEP’s show something also (and I get a DX of MS) will I then need to think about drugs or is it, again, a case of waiting for a relapse?
It might be another ten years before I relapse again! …if at all.
I think what worries me is that, although I have recovered well, without the need for drugs, I am still not fully recovered. I got to about 90% recovered and then stopped. Some days I would say I even regress a bit and go back to about 75% recovered because some days my legs (especially left) feel very stiff and tight and weak. Some days I feel exhausted mowing the lawn when I can usually do that and more no problem. Some days I sleep for about 12 hours! Some days I feel double my age.
I still have pins and needles and slight numbness in fingertips and toes on left side. Usually worse in evenings.
I am not back to my normal self and wondered if I will? Is there a time limit for recovery? It’s been over 3 months now since my first episode. I recovered mostly in 8 weeks but residual symptoms still remain.
I have no new symptoms, but the old ones sometimes return or are aggrivated by doing normal stuff like gardening and shopping etc.
Is there anyone here who has had a CIS with a positive MRI, VEP and LP but no DX and no meds?
What do you do??? Surely you can’t get that far, with the tests, and then sit and wait?
It’s mental cruelty!
If I had one episode and no lesion and no bands found from LP then I would be happy to carry on with my life thinking it was a one-off. It’s just knowing that I do have a lesion and waiting for LP results is like waiting to find out if you have been given your old life back or not.
Just, how do you cope?
If my LP and VEP’s are normal what then?
Why did one small lesion cause so much disability in those few weeks? Some people have loads of lesions yet very mild symptoms. I don’t understand it all.
Could the lesion have been caused by smoking or from a migraine attack instead?
I think I need to write all of this down and bombard my neuro at my next appointment and take notes of her answers!