I am a 37 year old female who has been experiencing symptoms for 6 months with no remission.
I’m suffering with headaches, pain in arms, legs and back, pins and needles in arms, legs , back, face, feet and hands, issues feeling unbalanced, numbness in legs and hands and pins and needles in tongue. These symptoms have been constant since last August and although the symptoms may lessen slightly at times they have never completely disappeared and if anything seem to have got progressively worse over the last 6 months.
I’ve seen my GP and a Neuro and had an MRI on my brain. This revealed 1 lesion but was inconclusive as the lesion did not point to anything. My Neuro said based on my physical exam and the MRI I don’t have MS but I’ve been discharged with no answers and I’m still worried as none of my symptoms seem to be disappearing.
I’ve read so many things about people being told they don’t have MS and then being told they do - The only thing I do have is a low normal B12 count - it’s currently 250. My GP says that these symptoms wouldn’t be caused by a low B12 count so I don’t know what to do next! I just feel like no-one is listening and the medical profession think I’m lying.
Any advice would be appreciated.
Hi, Just wanted to say hello,sorry I can’t advice you, but I do know how you feel. I have similiar symptoms to you and lets face it we know our own bodies and know there’s something not right. Frustrating when no answers are given. I’m waiting for a second opinion,I have had stroke ruled out,but still none the wiser as to what it could be. Well saying that was told last time it happened 3years ago it COULD be silent migraine. Have to say at one point,as was wondering if it was all in my head. Maybe you should go back to the docs and ask if a low B12 hasn’t caused these symptoms what else could have. It is very frustrating,and along waiting game.from my experience.
Sorry not much help
Thanks for replying Nat .
I think my GP now thinks I’m neurotic. I’ve asked for my B12 to be checked properly and I’m having a blood test next week - I’ve had enough now to be honest. It’s hard work feeling rubbish every day, trying to hold down a full time job and look after a teenager. I just want some answers and patience is not exactly in my vocabulary when it comes to things like this.
Hope you are doing okay.
I’ve got to the point off not wanting to go back to the docs incase they think i’m a hyprecondriac. I am just about managing to get through the working day. I have plenty of sleep, sleep well but wake tired. Other symptoms are rightsided weakness, pins and needles, pain in right arm and leg (not all the time) and when I had this 3years ago,I had sudden hearing loss in left ear (still no better) The fatigue is the thing that really gets me. Like you it’s getting the answers, knowng what it is and what you can do to manage it would be a start. I have a teenager and 2 younger kids,it really is hard work. I do have a good husband who is a big help,don’t know how we’d manage without him.
Hope you get some answers soon
My symptoms are global - I don’t have a side thats worse than the other and they are all over - It’s so stressful trying to carry on as normal when you know there’s something not quite right…I know what you mean about the doctors thinking you are a hypochondriac. I’m not over tired but I have forgotten what feeling ‘normal’ is like now.
Hope you get some answers soon too.
Hi Kate, and welcome
It would be very unusual for MS to affect so many parts of the body at once and, if it did, it would surely show up multiple abnormalities in the clinical examination that neuros do. So I think that, if I were you, I would want to know exactly what showed up in that exam. If there were abnormalities, then asking for a second opinion might be worthwhile, if only to get your spine scanned in case there is something there causing your problems. If there weren’t abnormalities, then I’d be asking my GP for help to discover what else might be causing it all or at least with managing the symptoms.
According to previous posters on here, B12 blood tests are not very reliable and, to know for sure, we should be tested for various B12 metabolites. This is not done normally. Perhaps that’s what you’re having done now? Vitamin B12 deficiency could well explain your symptoms, but then it is probably one of several different things that could - neurology is nothing if it’s not complicated!
I hope you get some answers soon.
Hello Karen. Thank you so much for responding. I’ve been reading posts on here for a while but this is my first time for posting.
My exam was normal - no sensory problems, a little bit of wobbling on the Romberg test but I was told nothing out of the ordinary and nothing that pointed towards anything abnormal.
I think it was only because my symptoms had gone on so long and I had made a real pain of myself and my headaches got really bad that I got the MRI scan on my brain. The doctors don’t seem to be concerned about me at all!
The Neuro said that I may need Cognitive Behavioural Therapy - I’m actually an Educational Psychologist so I’m pretty sure that I don’t and that I’m not stressed or all this is in my head but I just feel apart from the B12, I’ve hit a total brick wall!
In relation to some of the problems that people are experiencing, I feel like I don’t have it too badly BUT these symptoms are affecting my life -I’m certainly not the person that I was 6 months ago!
I wish doctors could just climb into our bodies sometimes and realise that what we are feeling is anything far from ‘normal’!!
CBT is worth a try if only so you can tell them you tried it, but also because it might help you deal with some of your symptoms (e.g. it has been shown to be effective for MS fatigue).
It may have something to do with the B12. A work colleague of mine had very similar symptoms to you, had an MRI which was clear, but her B12 levels came back low. She now goes every so many weeks (can’t remember how many exactly) for a B12 injection and her symptoms have cleared.