Hi everyone. New to this, hoping to stop the ‘drowning’ in information feeling!
I have had odd symptoms for three years. Started with pain in eye. Moved to pins and needles in feet and then lower legs. Reduced strength in legs - I was a keen runner but no longer do this as I struggle sometimes to climb the stairs. My newest symptom is pins and needles in my head. Sometimes it is on top of my head and feeling like crawling under skin, sometimes it’s down one side of my face.
I had a LP - clear. MRI showed small lesions. This was a long, 45 minute scan. 6 months later I had another MRI. This was about 20 minutes and showed lesions again. I moved area then and went to new neurologisit. A year later I had another MRI at a different hospital. This was 10 minutes of just my head and neck - and showed nothing. Apparently all of the lesions have gone.
Neurologist has discharged me. But I still can’t walk up the stairs without dragging myself up using the banister. I certainly can’t run!! And the pins and needles is driving me insane.
I know it probably isn’t MS as LP was clear but do I just accept being discharged after all of this? There is SOMETHING going on…
Any advice very much appreciated, thank you.
I’m new to all this but I didn’t think you had to have a positive lp to get a diagnosis of ms. I personally would go back to your gp about your symptoms. I’m the same used to run and have done marathons now getting up stairs wears me out, awful isn’t it X
Hello and welcome 
The first thing I think you should do is make sure that the most recent MRI is definitely of you. I know this sounds crazy, but it wouldn’t be the first time that a neuro looked at the wrong scans!
If you don’t have a copy of your MRIs, give the hospitals where you had them done a call and ask for copies. You may have to pay for them (typically about £20), but when you have them you will be able to compare the images to make sure that, firstly, your most recent scans don’t have any white spots on them (if they do, then the neuro looked at the wrong scans) and, secondly, that it is definitely your brain (compare the folds in the brain to the older scans - can you match them up? If you can’t, then the radiographer put your name on someone else’s scans). If you need help comparing the scans, just let me know.
Alternatively, see your GP and ask for a second opinion - your new symptoms justify it on their own, but definitely in light of the apparently disappearing lesions. To explain that last bit… There are reasons that lesions can disappear: it can happen because the body repairs them sufficiently well so that they are no longer visible on MRI and it can happen because the second/later MRI scans have rubbish resolution so that smaller lesions don’t show up. The first happens with lots of conditions, including MS, and if all your symptoms had started in one shortish period, then it would be perfectly possible that you’d had something like ADEM, a one off condition that is difficult to tell apart from MS except that ADEM’s lesions generally disappear in a second MRI whereas, while some MS lesions might disappear, there are quite likely to be new ones and not all of the old ones would have gone. I hope I’m not confusing you here?! Basically, if you had the one batch of symptoms, then the disappearing lesions might be explained by ADEM (or similar), but you do have new symptoms which means that it isn’t a one off - which means you need another opinion.
You can always ask your GP about the possibility of a scan mix-up too. He/she may be able to access the images so you don’t have to pay. Either way, do ask to see another neuro.
Let us know what happens?
Karen x
PS A negative LP makes MS less likely, but it cannot rule it out: about 10% of people with MS have a negative result.
Thank you so much arwen and Karen. I feel like I don’t dare go back down the gp as they think I am making it all up and wasting their time but this feeling is miserable. Generally I cope well and ignore it, plus it comes and goes so sometimes completely ok. But if I overdo it at work and spend too long on my feet, when I get home I sometimes feel like I can’t move my legs at all and sleep on the sofa to save using the stairs. I am 35 - ridiculous behaviour if there is nothing wrong with me! I really, really want to believe them that it is nothing but worried that by ignoring something it may make it worse.
I will make another gp appointment and try and get my scans (didn’t know I could request these). Thanks for the nudge that it may be the right thing to do.
B x