Hi all,
I’m new here and have not been diagnosed with MS yet. I just wanted to create a post to gain some feedback and maybe help me approach this very strange ‘limbo’ time!
So a little background I had an episode of ongoing headaches back in 2020 which lasted about 2 wks, this occurred in Jan of this year again and ever since I have had a headache every day without fail. Seen a neurologist in April she put me on meds to try help the headaches no let up! After my apt with her I started to develop more and more symptoms. I am now at the point were I am off work due to the extreme fatigue, constant pins & needles, numbness/heaviness in my limbs the list goes on and all of my symptoms can be symptoms of MS. Had a clear Brain MRI in June but the symptoms have definitely progressed a lot more rapidly in the last few weeks. Had a nerve conduction study last week and had bloods checked for auto-immune indicators. Having an MRI on my thoracic and lumbar spine this week.
Could lesions have appeared in the last 3/4 months? Has anyone had MRI’s repeated in that space of time? Should I push for another Brain MRI my neurologist didn’t seem to think I would need it as it was clear in June.
All I know is I am finding it more and more difficult to have a ‘normal’ life. I’m only 36 and a mammy to 2 young kids and I physically am failing infront of everyone’s eyes. I don’t recognise myself anymore. Any advice or feedback would be greatly appreciated!
Thanks 
Sorry you’re going through all this!
Absolutely an MRI can change as a relapse can happen any time, so theoretically it could be clear one day and not the next if that’s when the relapse hit.
Maybe see what the results from this round of tests are and if you are no closer to an answer I think you would be more than justified in pushing for a second brain MRI.
You could also request a lumbar puncture. My original MRIs were classed as normal (not the same thing as being completely clear) but it was the combo of lumbar puncture and nerve conduction results alongside that enabled the diagnosis to be made.
Hi,
Thank you so much for your reply. Can I ask what your nerve conduction study showed? And also did you feel worse after it? It seems to intensify things for me enhancing the tingling, pins and needles and numbness?
Does a lumbar puncture have to be requested by the neurologist or can your GP do that. When I went to my GP with my symptoms she was very concerned it was MS and was quite shocked the neurologist hadn’t requested a lumbar puncture.
Thanks again for your reply and I hope your doing well
The nerve conduction study I did was for the optic nerves only and was staring at a screen with a changing black and white checked pattern. My eyes felt a bit tired after but not any more so than if I’d spent ages staring at the TV or any other screen. I didn’t get any tingling or anything like that. Drove myself home after with no issues.
My neuro referred for the lumbar puncture. As far as I know it would need to be them and not your GP.
It was the second neuro I saw. First was NHS and fobbed me off as my MRI was normal. He was really quite rude and impatient. He told me I needed anti depressants as it was all anxiety. Honestly makes me fuming just remembering that moron. Never heard of anyone else losing their eyesight due to anxiety have you?!
I was very fortunate to be able to add myself to my husband’s medical insurance he has through work and get another opinion privately. He repeated the MRI and said he could see some tiny white dots that were non-specific and then also for the nerve conduction that showed a delay along both optic nerves. Due to those results he referred for the lumbar puncture and that came back positive and he could then diagnose. For what it’s worth a few white dots on an MRI often gets written up as normal. Normal and clear are not one and the same.
Hope some of that is helpful! Really feel for you. So frustrating having awful symptoms and no answers xx
Oh god that is awful that you experienced that.I am glad you pushed for a second opinion, I really feel like you have to push so hard and advocate so much for yourself and then you start to think ‘am I crazy, is this all in my head’… I am keeping a diary on my GP’s advice. It’s just so fustrating!
I also have work onto me for answers that I don’t even have for myself!
It’s good to speak to someone who understands.
My nerve conduction study was carried out on my hands and leg, I actually haven’t been having any eye symptoms really.
Thank you again