Forum

New and Possible MS Syrinx/Syringomyelia

Hi

I have been seeing a Neurologist for suspected MS due to ongoing fatigue/ funny head and achey, stiff legs and lots of other things like tingling, shooting pains, feeling weak, off balance and cognitive symptoms, blurry vision periodically etc. This started in Feb this year and is hopefully improving now but have had similar episodes of fatigue and not being right before. I also had a vision loss episode about 9 years ago. I have had an MRI of the brain which showed increased signal to left optic nerve and now one of the spine which the consultant said he can see a syrinx although he is awaiting the radiologist report. I am also waiting for results from VEP. My question is does anyone know if this could be mistaken for a MS lesion? Scared myself silly looking up this syrinx. I am just so confused as this just does not seem to fit my symptoms and the consultant even seems a bit unsure. He is arranging for me to go back middle of November to discuss it.

Thanks Katie

Hi Katie, and welcome to the site

I would guess that, yes, it is possible to confuse a syrinx with a lesion especially if you’re not an expert.

I would be very surprised if your VEPs were normal - damage to the optic nerve (“increased signal” = damage) would typically slow visual signals and create abnormal VEP results. But then, you know that your vision isn’t normal - all an abnormal VEP will do is confirm it.

It’s really too early to be guessing what might be wrong. Things like MS and its variants are possibilities, but it might be something completely different. If I were you, I would avoid googling things and wait until you see the neuro. What will be will be.

Hang in there.

Karen x

Just to update this I definately have a syrinx from T4-T9 however the neuro does not feel that it explains all of my symptoms and seems to still think it is highly likely I have demyelination too. He did not have all my results there as his secretary is off sick and nobody is covering. He said that if my VEP is positive then he will not need me to have the lumbar puncture done and he will diagnose me with MS although whether he will change his mind when I see him next is anyones guess. He has given me no advice on the syrinx but I am to see him again in 6 weeks.

Judith, I gather they are supposed to monitor syrinx though so it may be worth getting them to do another mri to see if it is still there or changed at all.

Katie

just found this post dont know how I missed it, I have a spinal syrinx also around T4 I was never told about it, I had to find it in some back records I dont know if this accounts for all my problem , as I have been dx with ME, still trying to find some answers

That’s terrible that they haven’t properly told you. I’m finding getting decent information about syrinxes a nightmare. Do you know the cause of yours? My consultant saying mine may be congenital but I was in a car crash a few years ago and I have also found an article which said that they are more likely to be a associated with MS than coincidental when being investigated for MS. I have still not managed to find out if there is anything that I should or shouldnt be doing it is all so contradictory and still not sure how worried I should be. My consultant definately says my symptoms are not all from the syrinx and seems to be relooking at MS since I have had a relapse since start of December. I have tried to look at spinal injurys to get an idea of what damage could occur from T4 down. I think ou should be having an MRI to monitor it but I’m not sure how often that should be so it is worth checking that out as they could refer you to a neurosurgeon if it were the cause. PM me if you want to know more.

Katie

Ive been told my syrinx is congenital I also have a borken bone at t4, only for me finding it in my notes I wouldnt have known, finding info on syrinx is a nightmare I have phoned a charity that deals with them and thet recommended getting to see a neuro surgeon, need to change gps first, Ive had back pains for over 20yrs but have never been xray, only sent for physio, and given pain killers. if you look at thwe symptoms of a syrinx their alot like ms, Ive also read there can be a link to ms.the doctors Ive seen up to now know very little about them, so Im still suffering sever pain all my symptoms are still with me[no need a carer from social services to help with personnel needs] also Im suffering from seizures and have them while asleep and bit my tongue which is a bit of a pain, but Ill fight on for some help