No diagnosis yet....but....

Hello all, I hope no one minds a new thread on this subject? My name’s Sam and I’m 33 years old. 4 1/2 weeks ago my vision went funny in one eye, was told to go to A&E. Had super treatment and then had to attend Bristol Eye Hospital. Lost sight totally after 7 days, then three days later it started to return. Diagnosis = optical neuritis, just over two weeks ago. Saw neuro on Saturday and had MRI on Sunday. Consultant called today and said I do have lesions but can’t diagnose MS until another symptom, but seeing him soon for follow up, he’s sending me to MS nurse and GP for bloods. I expected a result like this but I have a question for you, if any of you can help. Firstly having had the results about 12 hours ago I can’t sleep, and I am getting these symptoms especially in my arms, hands and legs. Nothing painful but tingling and the like, and it’s keeping me awake, to the point I’ve got up, made some cereal and a cup of tea - and it’s 2:30am! I can’t tell whether they are just imaginations because I’ve been reading about symptoms or real, and wonder what others experience of early stages especially pre-diagnosis is? Any info would be massively helpful. Thanks very much. Sam

Hi Sam, I’m still waiting to see a neurologist and get my MRI. But have been put on various drugs while I wait for my appointments. I had urine retention, facial drooping (which landed me a week in hospital), weakness in arms and legs, leg spasms, headache, shaking and clumsiness among other things previously. Now after iv started taking the drugs everything seems to get worse and I’m unsure if its side effects of the drugs, caused by worry, my mind playing tricks on me or just something that would have happened anyway. It’s very frustrating and I would like it all to stop now as like you I have once again been woken in the middle of the night, with what feels like growing pains in my legs and it feels like a bee is buzzing round inside my skull. Im once again, unable to return to sleep and have to be in work at 6am. I definitely find I feel worse when I’m tired and also find I can’t sleep when I feel at my worst so it’s a no win situation really. Back to the GP for stronger sleeping pills for me I think. Hope you start feeling better soon or that you get some definit answers soon.

I would wait a day or so and see if it settles - it may be just because you are hyper-aware looking for things, but on the other hand stress always seems to trigger relapses in me so it’s possible you are stressed enough to trigger a second symptom.

The other thing I would think about is your past medical history, I had ON and lesions on MRI but not diagnosed with MS then due to absence of second attack, but in fact I had previously had another symptom but no-one realised at the time (leg numbness, persisting for ages - doctor thought was stress and put me on diazepam, was in fact Transverse Myelitis). Finally got picked up years later on when a neurologist looked at my history. On the upside, I managed over 10 years with no relapses until quite recently when I have suddenly started having them again so it may not be as bad as you fear, at least not straightaway.

Part of me wants to wish you no more symptoms, but on the other hand I know that leaves you in limbo after ON as you will never definitely NOT have MS in a medical sense. So I hope your current symptoms go for now, and you get the answers you want.

Hi Sam and welcome to the forum :slight_smile: There is a very real possibility that your brain is playing tricks on you, but there is also a possibility that the sensations are real and you’ve just noticed them or real and new. The McDonald diagnostic criteria for MS stipulate that someone has to have multiple lesions (in specific places) and at least two attacks. This is largely because there are one off things that can look like MS on MRI. Someone who meets one criterion, but not the other is diagnosed with Probable/possible MS. Now comes the tricky bit in your case: if these new sensations are real, they are right on the cusp of being considered part of the same attack that caused your optic neuritis, ie a month since the previous attack started. What a neuro might do in these circumstances is order a new MRI, to see if there are new lesions in which case they will count it as a new attack, but of course you’ve just had one. But then, I’m getting ahead of the situation - we don’t know if these sensations are going to be hanging around or not yet. If they do and you still have them this evening eg, then you definitely need to let your neuro know. Karen x

Morning Bethan Thank you so much for your reply, I must admit I’ve just seen your main post and now think what you have had is so much worse, I’m so sorry. Reading your symptoms/feelings has been really helpful though, thank you so much. I can’t believe you didn’t get your MRI being in hospital for 6 days, especially with all your symptoms, and hope you get seen very quickly. My care has been wonderful here in Bristol and I can’t say a better word for the doctors and consultants I’ve seen. I had my scan on Sunday and my consultant rang me yesterday with the results, he was marvellous, Anyway, I hope you do OK and really improve soon.

Morning Karen Thanks for your welcome, and very helpful information. I’ve only just had my MRI but had these feelings - not painful really but weird, over a few nights, when the eye went strange I felt 100% fine with it, even when my sight had gone, and no other symptoms, but now I feel it in my arms and legs. I’ll see how it goes the next couple of days and should be seeing my neuro shortly anyway. I also want to discuss some strange symptoms I had about 5 years ago with him which may shed a bit of light too. Thank you so much for your reply, it’s hugely appreciated. Sam

Morning Zedsee I can’t keep up with all these replies! Thank you so much for yours. Infesting what you say about history as I’ve really been thinking and know I had some things about 5 years ago, which I didn’t do anything about and they went after about 2 - 3 weeks I think, as well as something with my eye (same as the ON one) which is on my medical records. We shall see. Thank you so much for your reply though it really has helped. Sam

Hi Sam

I understand just how you feel about questioning your new symptoms, “Are they real of am I imagining them because I am half expecting them?” When I was undaignosed I asked myself that several times, I’ve also asked it since my recent daignosis.

When I can’t sleep I get up and do something, anything, just to distract me, but I don’t drink tea or coffee in the night time, that doesn’t help at all.

Oh, and I tell my doctors everything - whether I think it’s real or not, it could be important.


Thank you Ben, really interesting to hear other people’s experience and makes me think I’m not just going mad! I’m making a list now so I can tell the neuro when I see him next. I agree with getting up and doing something and will go careful on the hot drinks. I don’t think I’m imagining the symptoms as they are real feelings and I’ve not had them before, but I’m just not sure. We’ll see how it goes but I feel pretty positive about it all at the moment. Sam