Hi i am new to this forum I have just been diagnosed with ms based on mris. 1st brain mri had 12 lesions and follow up 3 mths later had another 2-3. 3lesions on spine but follow 3 months later there was no change. Only symptom ive had was very very mild numbness ir arm amd tiredness. Diagnosis based on 2-3 new lesions. Have not been refered for a lp. Blood work showed b12 of 90 but neurologist said it isnt low enough to have caused the lesions. Has anyone had any experience similar i am a bit confused as to how it can be ms with little or no symptoms. I am a 27yo female fit and healthy and never had any health issues. Have noticed significant hair loss over last year which i read can happen from a b12 deficiency Any thoughts or suggestions would be most appreciated. I am going to seek a second opinion as neuro wants me to start on gileyna but i am not sure Thanks
Hi and welcome I know that b12 deficiency can cause MS like symptoms, but if your neurologist has given you a dx then I think it’s unlikely (unfortunately) to be the cause. The neuro’s don’t give out the diagnosis easily, many people can wait years for one. I was for and well until a couple of years ago, was 27. I went to GP for numbness and sensory issues. Found to have borderline b12 and low vit d. I was given supplements and off i went. then i had a big relapse and fast forward to feb 13 and I’m diagnosed with RRMS. So it does happen. I’m confused as to why it’s been suggested you go straight on to gilenya? It was my understanding its a second line dmd, reserved for those with highly active ms, which you suggest yours isn’t? Although maybe the number of lesions is prompting the decision? I think a second opinion is a good idea, hopefully it will allay the concerns and doubts you have. I hope you get some answers soon. Lx
It is all very confusing and scary x
Do you mind if I ask what prompted your MRI scans in the first place? You mentioned ‘very very mild numbness in arm and tiredness’ - but usually “very very mild” numbness and ‘tiredness’ aren’t enough to trigger referal for MRI scan - unless they were causing you and your doctor a reasonable level of concern? I know it can be tempting to downplay symptoms and to look for alternative explanations, but MS diagnosis is not given out easily - although asking for a secnd opinion might be a good option if you don’t feel fully convinced.
sorry this is happening to you x
Thank you so much for your messages. I mentioned to the doctor at a routine appointment about the numbness. I had a similar episode 18 months ago the numbness was worse but went away so i left it. When i mentioned my aunt had ms the doctor automatically said I should go for the MRI.
Leora - do you mind me asking do you have many attacks? I find it hard to accept that things may get a lot worse for me in the future.
The neurologist told me gileyna was the best treatment but what i didnt like was she said it is not just pharmaceutical companies trying to make money. She also said she didnt think any neurologist would doubt her diagnosis. Not sure if this is normal for them to say but it put doubts in my mind. I should mention i am an expat in Australia and am seeing a neuro here. It comes across to me that she is getting commission for putting patients on gileyna, it costs 60k a year for the taxpayer per patient. When i asked about the injections she sort of dismissed them and said gileyna is easier because its just a tablet daily. She is also not wanting to give me my medical records or a referral for a second opinion.
Do you know if a b12 level of 90 is very low?
thanks so much really appreciate your time in reading and replying
Hi again I don’t have loads of relapses. Had a really big one last year that left me in hospital for a few days. But I recovered well, back to normal -whatever that is! I have had a couple this year thankfully they have not been so severe, I am now using Rebif which hopefully will slow them down. I’m not sure of the way healtcare works in oz, but if you feel you need a second opinion then you should have the right to one. As long as you polite but firm your neurologist shouldn’t stand in your way. If she does, I would speak to somebody else, like a GP. I am not sure about the b12 range. Have you been given supplements or injections? In the UK, we are asked to use a website called ms decisions. www.msdecisions.co.uk it is really useful for finding out which dmd would suit your lifestyle better-rather than what the neuro thinks is best. Please don’t let yourself be bullied into anything it’s your body after all. I know at first a dx can be scary, so be kind to yourself, it takes time to get your head round it all. I don’t know what may happen in the future but nobody else does either, so try not to worry and take each day as it comes. Best of luck, let us know how you get on? Lx
Sorry the website address is actually http://www.msdecisions.org.uk HTH Lx