I’m still in limbo, waiting and wondering what exactly is going on with my body.
Initially it was thought nutritional deficiencies as I had low ferritin and later, low b12, however my symptoms have slowly gotten worse even with supplementing iron for several months and having loading doses of b12. The GP was unhappy with how brisk my knee reflexes were so sent me to a Neuro surgeon who recommended I get a head and spinal cord MRI. Please note that I already had a spinal cord MRI in March this year which came back clear.
Has anyone ever heard of lesions developing as quickly as that? The Neuro thought it best to redo my spinal cord in case anything is progressing. Initially I had this MRI for back pain and restless legs.
Anyway, MRIs were completed on Friday so just sitting tight.
I should add that my main current symptoms are as follows:
Muscle Twitches
Leg Weakness
Fatigue
Reflux
Pellet Stool
Struggling to curl my toes downwards
Bouts of Dizzyness
Double vision when looking to the far right or left
I don’t know enough about it to answer your question, but thethere’s no harm in having another look - is there? - and it sounds as though you have a good team on your case, which is good to hear.
Good luck with the waiting, and I hope that you get some answers soon.
Hi there! It’s never been mentioned… my spinal cord mri earlier in the year was clear so I guess it’s unlikely to be that. This is my first brain MRI though. We’ll see.
I just wondered how quickly lesions can appear really… if it’s something that happens over years, months, weeks. Perhaps it varies?
I have smouldering PPMS, i.e. PPMS with NEIDA which means lesions are present but apparently not worsening although symptoms are continuing to worsen. With no inflammation, there is nothing they can treat though admittedly in my case, going with a misdiagnosis for years and no brain MRI’s as a result, they can’t say for sure how old my lesions are. Nothing new in 18 months though…
Current MRI technology can resolve lesions down to 3mm in size. One theory is that with smouldering MS the lesions could be there but too small to be detected. So it’s not just rapidity, it could be size too.
Everyone has a different version of MS. Some may have no lesions in spinal cord, some may have none in head. I had none in my spinal cord so the various spinal MRI’s I had missed the lesions in my head.
