Hi there. My MRI results - One lesion in the left periventricular white matter extending to frontal horn which the consultant & my Neurologist both agree is demyelination most likely MS but I need to get a lumbar puncture to verify. I’ve got another MRI in around 9months with contrast and dwi/swi… Im absolutely terrified of lumbar injections as ones I’ve had before for other things have been horrific, if they were 100% accurate I would have to just face my fear but I’m thinking I will just wait… is that silly?? All other tests are clear, such as lyme… I know you can’t confirm for me but I’m thinking it really sounds like it must be MS? The symptoms they are matching are numb right foot, pins n needles, leg weakness… I have lots of other symptoms like fatigue, severe pain, dizziness, vertigo, head & eye pain, blurred vision but have fibro, OA, vestibular migraines & carpal tunnel so o think those symptoms are from those things… Sorry I’m rambling on. Thank you in advance if you read all this & reply. Xx
I had a lumber puncture in January, it was fine, a bit uncomfortable but no problems, the blood test was worse. I was able to stay in bed for a couple of days and drank a lot of cola.
I am waiting for my second MRI, the neurologist said that my lesion could be demyelinating disease and then ordered the tests for me.
I went to the doctor yesterday with my mum it was mums appointment but I asked for an xray on my left hip as it was very painful. She also said to me looking at my notes to be prepared that it might be MS. As someone says be prepared for the worst and hope for the best.
Generally one lesion alone isn’t sufficient to diagnose MS, unless there is verifiable evidence of prior relapses. The McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria ) explains what evidence is necessary to diagnose MS. You should note that LP evidence is secondary to MRI.
Only around 80-95% of people with MS test positive for Oligoclonal bands in their CSF. So it’s not 100% accurate evidence of MS.
If you don’t want an LP (and it is your right to refuse one), then don’t have it. If you are happy for wait until your next MRI for confirmation of the diagnosis, then you can do that.
The best reason to have the LP is if you are having a relapse and remission course of symptoms. If the LP was positive for O bands, then the neurologist might be inclined to diagnose now and start you on a disease modifying drug (DMD) in order to attempt prevention of future relapses.
If you decided to go along with the neurologists plan to have the LP, then as Kay said, it’s not always as horrific as your prior experience.
Hi, I, too, had one lesion found on my spine after I went in with tingling in my arm and loss of cold sensation in my hand. The tingling started going into my leg, which was when I called. A periventrical (spelling?) was found on my brain mri but they still considered it normal. We chose to wait on a LP. 20 years ago I had optic neuritis too. Labs came back fine with my anti-nuclear body being slightly higher (WNL is under 20 and mine was 27). Neurologist stated it is likely MS but felt that it was mild form. Fast forward six months later. I just went in this week for another MRI-brain and spinal cord. For the past two weeks I’m having burning sensation in my one leg and it started moving up to my arm. It’s been okay, with the exception of one morning while in the shower. I thought my leg was on fire. It continued even after I got out. The only relief was my husband grabbing me and ice pack to put on my leg. That freaked me out to say the least. There have been weird sensations that I don’t know if it’s just normal body things or what. Every now and then I have a sharp jolting pain in my neck that goes up to my head, sharp pains that whichky go in my ribs, and a feeling like I have a foggy mist in my brain (hard to explain) that comes and goes fairly quickly. I hope you get answers. It’s tough to be in this situation. It’s not that I want a diagnosis of MS but something is wrong and not knowing what it is doesn’t help. K
Thank you so much for your replies. I’m still going back n forth in my head about the LP, I really don’t think I can go through with it, 3 c-sections & the lumbar injections were hell as was a steroid injection for pain in the same area but this limbo land is no fun! Honestly thinking it would be just my luck to have a negative LP but still have MS! I just don’t think there is anything else it could be & the Neuro would be surprised if it’s not… I’ve got a follow up with her in 4 months so going to try & put it out my mind until then… ha, not easy!! I’ve just started Vitamin D & serum folate supplements from Doc because I was low in that, hoping that makes some sort of difference to the fatigue.
Your decision makes absolute sense.
It might be worth starting to keep a diary or timeline of your possible MS type symptoms so you have some data to share with the neurologist at your next appointment. If you are having relapses, it’s possible that your next MRI could be moved up and diagnosis could be done with that evidence compared to your first MRI.