Not sure if ms but would like some advice of what to do next please!

Hi everyone, I am new on here but I just wanted some advice really of what to do next.

Its a long story but when I was 12, I collapsed and I couldn’t walk, I instantly had a numb leg and abdominal area when this happened so I was taken to hospital. All tests came back clear and I just after a month or so I managed to learn to walk again. After a few years of investigations the Doctors’s gave up and just put it down to a viral infection, I also suffered from fatigue even before this as a young child.

I am now 25 and I still have a numb left leg (I can feel my leg but it is a different sensation to my other leg.) I also suffer other symptoms since that day so I recently went back to the doctor, as now I am older, I’ve thought about things a lot more and I don’t want to have to carry on living like this not knowing what is wrong. I also have a 4 year old boy so I feel it’s much more important to find out now and I also worry that because this happened when I was a child, what if something was missed on all the tests I had or what if they didn’t even show up as I was so young. My gran had MS and so did her father which I think also could be relevant. The doctor did my bloods and all came back fine, he was adamant it isn’t MS and wasn’t anything because I have had the same symptoms for 12+years but I pushed and he reluctantly referred me to the neurologist. (See below after symptoms.)

The symptoms I have are

Extreme fatigue - I can have 8 hours+ sleep and still need to have a nap every afternoon, apart from when I work but then I come home so exhausted I can’t do anything, I struggle to move and I get very achy. I wake up not feeling refreshed all the time. I struggle to go on days out and do everyday tasks without be so tired especially in the afternoons.

Migraines - From approximately the age of 16 I have suffered with migraines about twice a month. They make me sick quite often and nauseous all the time. I am even more fatigued than normal, they last about 2-3 days. Again I have been to the doctors about this, and no tests were done but he prescribes me sumatriptan and that does seem to help. I don’t get any kind of aura with my migraines but I can tell when I am going to get one as my eyes do go droopy.

Legs - Obviously I have a numbness sensation all the way down my left leg which is there all the time, I don’t think it’s in my abdominal area much anymore but it is hard to tell as I am so used to it now, I do feel temperature differences in the bath on my legs and my back and tummy. I get very weak legs regularly and they can also feel heavy and stiff this obviously gets worse with walking etc… It doesn’t help that I have to stand all day at my job only 3 days a week though. My reflex in my left leg seems to be on/off, can’t always be found straight away. I get twitches all over my body but more so in both of my legs, it doesn’t go away until I have itched the area. Often when I am on the toilet I get pins and needles in my left leg and then stronger numbness, I know it can be down to positioning but it is only ever in my left leg sometimes it goes so numb when I get up I have fallen over. When I am walking I can feel my walking gait is different it almost feels like I drag my left leg especially when I’m tired. It feels like my brain doesn’t tell both of my legs to go.

Other - I get a shoulder/neck muscle pain everyday constant pain, it gets worse when tired, busy or if I do exercise etc, it just feels like very tight stiff muscle. I’m assuming it’s down to where I walk oddly and putting my posture out. I have had vitamin b12 injections in the past but only one course when I was approximately 16/17/18 years old, can’t remember exactly. I occasionally get shaky hands and arms but doesn’t happen that often. My partner also says I am down and irritable and shout all the time without even realising.

I went to the neurologist last week and as soon as I walked in he seemed to already dismiss anything straight away I only had chance to breifly say about my fatigue and migraines and then he took me through to do strength/balance tests and all was fine but that has always been fine. I just feel like he didn’t hear me out he had already made his decision before I even walked in the room, because my symptoms haven’t changed in so long. I got visibly upset as I wasn’t being listened to. He then proceeded to say that my symptoms are a ‘habit’ and I need to get out of the ‘habit’ which just made me feel like he thinks I’m making the whole thing up. He said he wasn’t going to do any further testing and gave me a website Which basically says you can have all these symptoms without having a neurological disease. I just feel like he had no sympathy, didn’t want to know about anything I had to say, more or less said I was making it up. I said to him your not the one that has to live with this though (I know people are worse off that me but it still isn’t nice to live with) my partner and my mum have been trying to encourage me to go back to the doctor to get referred for a second opinion but I am so unsure and nervous as I don’t want to be shut out again :(. I just don’t know what to do, has anyone got any advice please? Does anyone think I should go back?




you GP has responsibility for your overall health.

go back to GP and tell him everything.

forget the neuro for now but ask if you could be referred to a different neuro maybe.

get someone who has seen first hand how you are affected to go with you (your mum?)

how is your little boy coping?

let us know what happens.

carole x

As Carol advises, please go back to your GP for another conversation and reiterate that you’ve endured a collection of abnormal issues for a long time now, and it is only reasonable to expect these to be fully explored.

best of luck.