Just looking for some advice really.

I haven’t been diagnosed with Ms, but my mum thought it might hell if I spoke to someone on a forum who knew about it or experienced it. Last year I started getting numbness in my hands and face, it was mostly at night and I thought nothing of it really. I have SVT and just put it down to that. After a couple if months it stopped happening and I forgot about it. About three months ago I woke up my hands and face were numb, the feeling returned to my face after a few hours but my hands still felt weird, sort of tingly and number the same time. After a few days of this I went to the doctor, he suggested it might have been a B1 deficiency and put me on some tablets for two weeks to see if it got better. I was told to take them for two weeks and then have a week without taking them. I’ve the next two weeks my symptoms go worse, instead of just numbness of the hands it was also being accompanied by stabbing pins feeling up my arms that would come and go. I tried to hand a curtain rail and couldn’t get a strong enough grip on the screwdriver. I was feeling exhausted no matter how much sleep I had, it got to the point I was sleeping during the day when my baby took a nap and still feeling so tired it was a struggle to get anything done. I was felt foggy headed, though I put that down to the exhaustion. My feet started going numb on and off and I was started getting random muscle twitching in my thighs that made my legs jerk so badly it was difficult to walk, like the floor was moving under me. I was suddenly needing to go to the toilet two/three times a night which wasn’t helping the tired feeling. I got a weird tingling feeling down my back which then lead to days of back pain before reverting to the tingling feeling. My mum took me back to the doctors and asked if they could test me for auto immune diseases, as they run in the family, she had ulcerated colitis and my aunt has lupus. And also asked about ms as she thought the symptoms sounded alot like that. At first the doctor tried to put it down to my depression, as if it was all in my head. She agreed to do blood tests to check for lupus and suggested that because their new nurse used to be an ms specialist he could have a look at me. She sent me to the nurse he ran me through some balance and vision tests and told me whatever was wrong with me it wasn’t caused by my brain. So I went home and waited for my appointment for ky blood test all the time trying my hardest to keep up with three kids age 18 months to 7 years. It was a struggle, all I wanted to do was sleep. My strength in my hands seemed to get worse, where as the problems everywhere else seemed to come and got my hands and my exhaustion seemed constant. Last week I went back to the doctor, blood results where all normal, she said she was confused by my symptoms as they didn’t fit one thing and she was going to refer me to the hospitals Neuromuscular specialist. My mum is still convinced I have ms but because I haven’t experienced any vision problems the doctor doesn’t think it is. All I know is the exhaustion has gotten so bad now I’m having to call my mum up for help because I can’t cope. I’m falling asleep with my 18 month old pulling my hair. And don’t even mention buttons to me, I have been defeated many times by those over the past week. My fingers seem to want to do the opposite to what I’m telling them. Basically any advice or opinion on the matter would be apreciated. Honestly I just wish someone could tell me what I do have and how to manage or fix it so I can cope with everything easier. Being able to feel when I cut my finger before picking up a baby in a white top would be great too haha. Thanks in advance. Xxx

hi twistix

B1 (thiamine) helped me with my tingling feet, they stopped tingling.

however it came back a few months later and i was eventually diagnosed with rrms.

it isn’t appropriate to suggest medications for you because it is a totally different illness that you have.

now the feeling tired or fatigue i can say a lot on.

listen to your body, rest when you can, don’t do too much in one go.

bladder is another thing i know about.

a medication called betmiga (mirabegron) helped me a lot so ask your gp about it.

housework is not essential so spend that time having cuddles with your babes.

good luck

carole x

My MS started with eyes then many years later numbeness down one whole side (15 years on I still have numbness in hand and below knees. I’ve also had a numb mouth - certain people may have taken joy from that one). Nothing can be ruled in or out until you have an MRI. Balance tests by a GP/nurse cannot diagnose conditions like MS (hey, my Doctor banged my knees and said I drank too much from client lunches - went private at the time - MR*I - one week later - MS.


I would surgest (spelt wrongly sorry) that you visit your GP again and ask to be referred to neurologist, then you may get an answer. But do push for it and say you would like a MRI. Wishing you all the best.



I agree with Janet. MS does not always come along with vision problems. Although the GP is probably aware that many people’s first MS symptom is optic neuritis. It wasn’t mine. So referral to a neurologist sounds like what you need, although of course, MS has so many symptoms that are shared with other diagnoses that it could be that your symptoms are caused by something else entirely. One of the problems is that if you go to see a doctor suggesting certain diseases or even groups of diseases, they may not be too keen, because instead of presenting them with a group of symptoms and allowing them to diagnose, you are suggesting a disease and fitting your symptoms into that. So, my suggestion is for you to write a list of your symptoms, with some idea of when they started, how long they lasted, whether they’ve stayed with you or got better, in part or completely. You could then take this list to your GP. Ask for their advice as to whether you should actually be referred to a neurologist. If you take your mother with you (actually always a good idea or have company to help you remember what’s said), ask her not to suggest auto immune diseases or MS as that doesn’t always help. It’s hard for mums to forget you’re an adult and to not speak on your behalf, but when it’s about your health, it’s better to come from you. If your GP won’t refer you to a neurologist, but you are convinced after writing it all down, that it’s neurological, then see if you can afford an initial appointment with a private neurologist. Preferably one with an NHS practice as well, then if s/he thinks MRI or other tests are needed, you can be referred back to the NHS for the expensive part. Best of luck. (Btw, when you write posts on here, try to break them up into short paragraphs, it’s easier to read.) Sue

Hello, I agree entirely with those that have suggested that you have an MRI. NOT knowing something is almost as bad as the worst news of all. An MRI is as easy as pie and totally painless so there is nothing to fear there. Very best of luck to you and keep us all informed. Moira

Hi, Trying to get used to using an online forum again. We’re hoping if we speak to the Neuromuscular specialist they will help but we aren’t sure how long it will take to get the referral. Hands are becoming slow to respond, I play on the PlayStation with my nephew in the evenings after kids are asleep and I’ve been having difficulty with that. My thumb movements are jurky and my fingers are clumsy. My back pain has gotten a lot worse, I can’t move without causing pain, finding a comfortable position is hard and walking for long periods or bending makes it worse. I feel completely useless at the moment between the clumbsy hands and the back that brings me to tears. I’m sleeping 10-12 hours at night and 2 during the day when toddler goes for his nap and still barely have the do anything. I’m pretty sure I could sleep 24 hours and still only manage a couple of hours awake before I wanted to sleep again. Will have to go to doctors and get some help with my back atleast because I can’t live like this, my kids need me to be able to do things for them not have me asking them to do things for me. I will try to keep you all updated with what happens.

I made an appointment to see doctor yesterday to see if there was anything I could get to help with the pain in my back. The only appointment I could get was with the nurse practitioner who did the balance and vision tests. He felt down my spine and did some reflex tests again, asked me if I’ve had more frequent bathroom visits and if I’d had any pain. I told him I’d been going more at night but no pain urinating. I started having muscle spasms all over making my body jurk. My knees and thighs kept jumping and my neck and I had no control over it. My mum asked him about it an all he could say was it was nothing he did and we shouldn’t worry about it. Easy for him to say lol I walked around for nearly an hour looking like I was bouncing on the balls if my feet and nodding. And when a few went in my stomach it hurt my back so that wasn’t fun. I’m hoping I dint have to wait too long to see the specialist I’ve been refered to. Mums told me to start a symptom diary so I have dates and symptoms written down when I see them.