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Confusing visit with my neuro!

Evening all I’m soooo confused! So September last year I was dx with rrms and started on Rebif, within a couple was of dx i suffered a major relapse leaving me house bound for 4mths. So for the past 12mths my neuro has been treating me for rrms, I am now more mobile all be it limited (can walk/wobble for about 20-30m), and have been having Physio and trying a cocktail of meds to try and improve. Anyway, got an emergency appointment with my neuro today as I am getting very frustrated not being able to get out and about (have just been off for the 6wks summer hols, but I couldn’t treat my daughter with days trips etc as I just can’t get around very far). My neuro was talking about each of my episodes and is puzzled that each MRI I’ve had done over the past 4 yrs have shown my brain to be all clear, and so my attacks are only happening on my spine, my last MRI was back in April so he’s sending me for another one soon, he said if it still shows my brain to be clear he wonders if my condition is multiple myelitis or something else and not ms! I’m confused, what else could it be, why aren’t my legs improving?! Usually my left leg is the bad one, but for the past week my right leg is much weaker, and today I feel as if I’m dragging my leg rather then walking! I have been given a prescription of gabapentin to start to see of they help my heavy, useless legs! Can anyone shed any light on this?! Thank you I’m advance Liana :slight_smile:

Hi Liana,

It is unusual, but not impossible (as your case demonstrates!) to be diagnosed without any evidence of brain lesions.

MS is the most common demyelinating disease, but not the only one. There are others - some of which affect only or mainly the spine. Devic’s disease is one that springs to mind - this affects principally the spinal cord and optic nerve. But please don’t assume from this that it’s definitely Devic’s. It’s just one I happen to know of. I expect there are others.

Even if the initial diagnosis was correct, improvement from relapses can be very slow (months), and often not perfect. Treating the symptoms with a combination of drugs and physiotherapy CAN help, but will not achieve miracles, if the fundamental problem is spinal cord damage, as none of it repairs the actual damage. Your body has to do that by itself - although sometimes a course of steroids will speed things up. Only time will tell how good the repairs will be, or how long they will take to complete. Drugs like gabapentin may reduce unpleasant sensations, but are unlikely to dramatically improve walking ability.

Although physiotherapy can’t actually mend things either, it can improve strength and stamina, and whatever functionality you still have. It can help both muscles and nerve pathways get practice, so they don’t decline further, from lack of use.

I hope you get some answers soon!

Tina

x

I know a lady who has (excuse the probable bad spelling!) Transverse Myelitis - from what I know from conversation in passing, it’s like MS but just the spine and from what I know, she’s treated with similar/same as MS too (let’s put it this way, the drug she mentioned was one I’d heard of from on here, it might even be what you’re on). I hope you get it sorted soon, there’s nothing more frustrating then feeling you’re in the dark and not knowing what to do for the best. She walks with a stick and does suffer from some back-ache from what I know.

Take care and my post is obviously just me putting 2 and 2 together (and coming up with 5) - I really hope you have some answers soon

Sonia x

Thank you Tina and Sonia, your suggestions have given me more of an in site, I guess I need to wait for the next MRI and blood tests results and take it from there! xx