I’m wondering if anyone here has been diagnosed with MS with only spinal cord lesions (brain clear)?
Here’s a little bit of info on my story so far. I’m undiagnosed (and fingers crossed will remain clear).
A couple of months ago I had a very sudden onset of Optic Neuritis which was diagnosed at the hospital eye clinic. From this diagnosis an MRI scan was requested of my optic nerve and brain and I was also referred to a neurologist. I became really unwell when I had the optic neuritis and assumed I was coming down with some sort of virus. I felt unbelievably tired, had a tight chest which lasted a few hours in the night, extreme pins and needles in my arms and difficulty thinking. I continued to feel really unwell for a few weeks and had a very quick appointment come though for the neurologist. He did his assessment and advised he strongly suspected MS but needed the MRI scans to confirm. He also requested a cervical spinal cord MRI too.
After feeling the worst I’ve ever felt for 6 weeks, I’ve turned a corner and starting to feel like I’m improving for the last few weeks. The fatigue has lifted (I never knew the difference between fatigue and tiredness until now!) but I’m still suffering with a number of symptoms. This includes numbness below the knees, pins & needles, burning feet feeling, tingling over my spine and weakness on my right side. My right leg is very stiff and tires easily and when walking it often spasms. My eyesight is improving and I’ve been back for a check up at the hospital eye clinic who are pleased with the progress.
I’ve seen the neurologist again today and the great news is that my MRI scans so far don’t indicate MS (scans all done without contrast). However, the neurological assessment is still showing areas of concern. He’s concerned about the high knee reflex (especially on my right), reduced strength on right side and positive Babinski and that this all has started around the time of optic Neuritis onset. I’m therefore having another MRI this time of my thoracic spinal cord and then might need a lumbar puncture.
The neurologist strongly suspected MS when we met last time and he has said that it could still be a possibility or this could be an isolated incident. I’m feeling hopeful that it’s not MS following the scan results so far but I was wondering if anyone on here has been diagnosed just with spinal lesions only? Also did anyone experience other symptoms when they had an onset of Optic neuritis?
To be honest right now I just want to get back to my normal self but these residing symptoms just don’t seem to budge. I’m really grateful that my neurologist hasn’t given up on me yet and is trying to find answers. I know it’s often a long road to diagnosis for many with MS and sometimes it just ends up being inconclusive.
I guess it is what it is. I try to not spend much time thinking about it all. I’m hoping that I’ll keep improving each week and the symptoms take note of their eviction notice.
I’m scheduled for my MRIs tomorrow, both brain and spine. After symptoms this past fall (tingling feeling in left arm, not being able to feel cold in my left hand, and the tingling going down to my leg) they did MRIs. The brain came back with something, but they didn’t refer to it as a lesion. My spinal cord did have a lesion. Six months later and I now have this burning sensation in my right leg that is moving into my right arm.
Thanks for sharing your experience Paddy. I did see your post in the group regarding your diagnosis. I hope you’re getting on well with treatment. It sounds like it was quite a quick diagnosis and a bit of a shock.
i didn’t have contrast on my brain or optic nerve scan. There was a finding on my optic nerve but the neurologist said it’s not related to MS and is benign.
My problems mostly affect my right side. Both legs are numb below knee but my right leg is worse and is very weak. It often spasms when walking… My right arm is also weak and painful in shoulder. I have frequent tingling over my spine, pins and needles in arms and reduced feeling. The pins and needles is now easing but is now replaced with pain, weakness and still numb. I also experience a feeling of burning. I often feel like I’m floating rather than walking as I don’t feel my feet touching the floor.
I’m now just waiting for the next thoracic scan and will see where we go from there. Neurologist suggested that a lumbar puncture may follow scan too. It’s all very strange and all started at the time of my optic neuritis.
Just hoping for answers. Clear scans are great but they make you feel like you’re going mad.
I think the whole thing can make you mad, you convince yourself that everything is fine and what happening is something else then something new happens or mostly begins again. I was talking with my mum in a restaurant and had my phone out I was showing her something and my arm was shaking so much that my mum took the phone off me as she couldn’t see what I was showing her.
Some places on my body that itch and I want to itch so badly but I know nothings there, no rash or redness I have even tried cream or antihistamine to help it is like I have chicken pox but with nothing to show for it.
Less about myself,have you had a lumber puncture, it’s fine just rest as much as you can, I don’t think that I will have another MRI as it’s to close to the neurologists appointment,
I haven’t had optic neuritis, I have double vision which is not fun as I can’t drive if I am not wearing my glasses anymore.
I hope you get more clear tests but they will have to find out what you have if it isn’t MS.
Hi did they do VEP tests? I had eye issues for several years 2000 blind, then 2004, issues with pain in eyes, 2008, again bad eyes. 2008 had VEP test positive bilaterally for ON. then loads of scans, with lesions in spine in different places. then 2015 november another VEP test, finally got results in feb 2016 another positive for Optical neuritis and was given the diagnosis of PPMS.
I have had more attacks i know when they are coming now. BUT i am also beset with ingrowing eyelashes, ugh. 2 times had them removed now i have them again. Not sure what is worse ingrowing eyelash or ON lol. next stop lazer treatment to stop them growing. the trouble is i get a mixture of things. the pain of the eye lash, and the double vision and weirdness of the ON.
anyway your not going mad it takes time sometimes for MS to finally show itself so that the neuro can give you a diagnosis.
The Hi Crazy Chick, thanks for the info. No, I’ve not had VEP. Just my field vision checked, pictures taken of optic nerve etc. My vision is recovering well, it’s still just a bit blurry in the corner of my eye which affects my field vision but the eye clinic were happy with the progress.
i think the other symptoms I’ve had have actually caused me more issues than the optic neuritis. My right arm is really weak and I keep dropping things and my right leg is the main issue that just won’t go away. It does seem strange how everything started within a few days of each other. When I first started relying unwell I had the most horrendous fatigue. Things have definitely improved over the last few weeks but I’m still suffering with my right side, the symptoms just won’t budge. The pins and needles feeling is now replaced with burning sensation and pain which painkillers like ibuprofen just doesn’t touch. Guess we will see what the next scan brings.
Thanks for your comment. It’s reassuring to know I’m not completely bonkers although I feel it at times. I know I’ve not had to wait anywhere near as long as some people but when you’re not well it feels like it’s forever. I’m really pleased with my neurologist so far. Whether I ever get answers for what’s going on with me who knows! If I was feeling like my normal self then I wouldn’t be worried.
Good luck with your next appointment and getting answers. Not long now.