In January 2013 i got an attack of optic neuritis in my right eye. It didn’t get better and my vision is now classed as being 6/36. Because it didn’t get any better I was refered to a neurologist as I’d started getting other symptoms like my legs felt like they were in fire when I was walking and my feet would actually go numb along with the bottom of my back going numb. While I was waiting in my neurologist appointments (roughly 3-4 months) I started getting other weird things happening, I’d be standing and just lose my balance and stumble or i’d get like shudders when I was walking and I’d feel my lips tingling my balance would go and my vision would go weird, I felt like you do when your up high and look down…if that makes sence?. My hands started to go numb or if I was holding something is just let go, not that I wanted to but it would just happen. I saw my neurologist and she had be go for a brain MRI which showed white spots on my brain that she couldn’t explain but she said they wernt what she’d expect to see on MS, I also had bloods done and again nothing showed up, I had a lumbar puncture which again showed nothing other than the pressure being higher than she’s have expected. My spinal MRI showed nothing either. In between this I’ve deteriorated to the point I need 2 walking sticks which now need to be changed to crutches as I keep losing control of my hands and dropping them. Some days my back lower actually feels like it’s going to snap and I feel like I could just vomit with the pain. I’m on 300mg of gabapentin 3 times a day and because my sleep patern is really bad I’m not on a sedative as well. I have days where my brain feels ‘fuzzy’ for want of a better word. I can’t concentrate on anything and I generally just feel like the lights are on but noones home. Other says I’ll be mud sentence then forget where I was going with it, or what we were talking about, I forget words like theyr on the tip of my tongue but j can’t remember them or a different word than I was actually thinking comes out. At my last neurologist appointment I was told as far as she’s concerned I have MS (my neurologist actually have me this forum to come to)but because no bands have shown up and nothing’s shown on my blood tests she can’t actually diagnose it. My head is all over the place and it’s starting to affect my family, my husbands had to start swing a councilor at work my 16 year old has started trying to do more around the house because she sees that maybe hoovering will leave my feeling really tired like I’ve been doing something really strenuous and my 9 year old is crying in school because she sees that walking her to school leaves me on agony. I’m sorry about rattling on I have a tendency to just type as I’m thinking and that’s not so good lol. I’m not even sure if it’s allowed for my to post since I’ve not had a diagnosis. Any advice anyone could give me would be so much appreciated, I feel like I can only tell my husband so much about how I feel because I don’t want to overload him if that makes sence? Anyway I’ll shut up for now, I hope it was ok to post here xx
Hi, Im not diagnosed either, thats what this part is here for xxx
Im so sorry you are having such a horrendous time, and yet you are putting so much energy into worrying about everyone else.
Im afraid I have no words of wisdom, but there are lovely people here who have a lot of knowledge and experience who may be able to help, I just wanted to respond ASAP so you wernt left alone xxxx
Thanks for the reply! I really appreciate it xxx I don’t know if it’s normal but I actually feel really guilty that my family are going trough this, I know it’s not my fault but I just keep thinking if it wasn’t for me, they wouldn’t have to del with it either. I’m only 36 but feel like I’m twice that age, I’ve always been a telly independent person, having to rely on people is really frustrating. I don’t really know what to say but I really hope you get diagnosed soon, living in limbo is horrible xxx
Aw Hun sorry you’re feeling so bad 
I’m not diagnosed but waiting for results of LP and a date for MRI. I understand the feeling of frustration of not knowing, but also the frustration to how this is affecting your everyday life!! Seeing how it’s impacting everyone and being powerless to stop it. I understand xxx
Have you had steroids at all? If you feel really stiff baclofen does help? My Gp prescribed it though be careful as others say it can make weakness much worse. I find pregabilin helps with the pain it’s similar to gabepentin. I drop things all the time too. I just became I’ll after having my baby x
Hi , sorry to hear that you are having a rough time.
Looking back did you have any suspicious attacks of anything strange before the optic neuritis in 2013.
The deterioration that you have seen seems very quick for MS, plus there seems to be too much going on at once. Also if your LP was clear and the brain spots are not typical of MS then it is even more unlikel
I have been in limbo for the last 5 years (longer if you count l’hermittes I had in 1991!). I am just about to seen 4th neurologist for another opinion. One of the neuros I saw said that he believes there are illness’s effecting the nervous system which noone has actually identifed yet but they are given the MS label as symptoms are similar even if diagnostic tests prove inconclusive. I was also told that a negative LP will show that it is not an autoimmune condition (which MS is). I have a negative LP and when I said to neuro that 5% of people with MS have a negative LP his reply was 'Yes, that 5% have a DX of MS but in reality they probably dont have it… just another as yet unidentifed neurological condition. II asked if I could have a dx of possible MS and given DMDs. He said no point as my immine system is no behaving incorrectly as LP was negative. II have not been much help but my advice would be to ask for as many tests to rule out as much as possible. It might also be good to get a second opinion.
Moyna xxx
Thank you all for the replies, it feels better to have people to talk to rather than just offloading on my husband. Kisywisy the waiting on results is so stressful isn’t it? I hope you get good news hun. Emfraserburgh no the opthamologist said steroids wouldn’t help so I’ve never been given any. I might ask my gp on Friday about baclofen and pregabilin, I’d try anything to get rid off the pain and actually be able to walk pain free!. Aw having a baby is stressful enough without being ill on top of it!. How old is your baby now? Are your symptoms worse now than they were?. Moyna For a few years before my optic neuritis my legs would go through phases where they were fine or they’d feel like the were on fire when I was walking but they came and went it wasn’t really frequent and my back was never an issue, just my legs. I’ve had trouble for years with being too hot too, for instance of it was a cold day everyone else might be wearing big jackets but i’d be fine with just a cardigan and if I did wear the big jacket the sweat would poor out of me, it was actually a family joke that I was like a portable hand heater since my hands were always roasting hot lol. Also my arm when I would write too much or use them too much would get weak but this would come and go too. It seemed like as soon as I’d made an appointment to see my dr the symptoms went away to it was pointless if that makes sence?. I’d also had floaters in my right eye but that was more annoying than anything. My main thing was being diagnosed with IBS but without sounding disgusting, I had extreme urgency when I needed to go, literally if I wasn’t able to get to a toilet within maybe 60 seconds I wouldn’t be able to hold it on. I’d had some tests done but nothing showed so I was just kept on IBS medication. My opthamologist has also been doing loads of tests so test wise I think theyr doing pretty well between the both of them. Whenever I see my neurologist and a test comes back clear it’s her saying well only 40% of people will show or 90% will show as positive. So when I ask if MS is off the table she’ll say no that just because it’s not showing doesn’t mean it’s not MS and that she’s had patients where it wasn’t uncommon for it to take up to 10-15 years for them to show as positive. My symptoms seem to have ramped up since 2013 though and my worst thing is actually my lower back, for instance today I went to morrisons with my husband and within 5 minutes of walking round the shop with a trolley I was in agony and felt like I was going to be sick, my husband had to take me back out to the car to sit while he went back inside. I’d actually be glad if my neurologist DID say it wasn’t MS, I feel like I get my hopes up with every appointment just for her to be told in her opinion it’s MS but tests for carpel tunnel and MRIs and blood tests have to be done so she can effectively tick a box that she can rule certain things out. Actually as in sitting typing this my left leg and foot have gone numb and moving it’s giving me pins and needles and my left hand pinky and forefinger are tingling! Xxx
Hi mum2. I fully empathise with your situation and you are not alone. The pain is a nightmare and a lot of your symptoms are very similar to mine. I get burning legs which are painful to have clothing on, the numbness in my feet and my balance is all over the show. I was on Gabapentin which also made my head fuzzy and difficulty in concentrating and my mind wondering off . I am now on pregabilin which is better. I also take baclofen but the pain is still there. Being in limbo and waiting for a full DX is very frustrating and my heart goes out to you. It is hard on the family to and again I feel for you and your family. It’s so frustrating that the medical profession expect people to live in a nightmare for years before a DX. I am also going through the waiting at the moment having been diagnosed with TM transverse myelitis last august and told it may be possible progressive MS. The 'MRI showed a lesion on my cervical spin and a possible another one in the same area. The evoke test was positive and I have just had a lumbar puncture now wait another frustrating wait. It is so hard to live with the nightmare symptoms and just see there are others in a similar position does help even if it’s to just rant on a pooh day. I really hope you do get some answers and pop back to your GP to see if he feels pregabalin may help. I am also trying some cream at the moment for neuropathic pain. It’s called capsaicin cream. Jason.
Have you considered Symphysis Pubis Dysfunction at all?
I was first DX with SPD when I was pregnant with my 4th child. By the time I was pregnant with my 5th child I had it through the front and back and he is now 11 and I am still in constant daily pain around my lower back and if I do anything that requires opening my legs too much (like having a good old bonk!) then the next day my front and back pubic bones are in agony…
I assumed SPD would go after pregnancy but seems not! … unless it is something else and I was actually having MS symptoms back 13 years ago?
Hi, I have found this site as all symptoms I have googled lead to MS sites. I have so many similar symptoms, I am worried sick but just need to know. I dont have any pain though, so part of me thinking it can’t be MS but so many other things it could very well be. I go for first MRI on Thursday. How long do you normally wait after scan til you see neurologist again. Very stressful which I don’t think is helping at all. :0/
Do you get headaches? If so, did the doctors rule out Idiopathic Intracranial Hypertension? That can also cause optic neuritis.