B12 and Myasthenia Gravis

[maridunian]

I have been on regular B12 injections for close on 15 years and doing very well.

In January 2018 i was diagnosed with generalised Myasthenia Gravis and I was wondering if any other B12 sufferer had this rare condition as well.

Thanks to my excellent neurologist my MG is under control.

[wedgewood]

I hope that you find a fellow -sufferer to compare notes with . It’s always helpful . It’s a case of any auto-immune condition usually having at least one companion .

If you don’t get a reply , post your request again . As AG is rare , you might not find a fellow -sufferer immediately .

Glad that you have found good medical treatment . Very best wishes .

[KylaTaff]

I am so relieved to find this post. My husband has been on B12 injections for about 3 years. It started because he had a drooping eyelid amongst other symptoms but despite many scans they could find nothing other than his B12 a little low - hence with no other clue they tried....and it worked.

Recently the ptosis has returned and is much worse - other symptoms include numb face, an odd feeling of being spaced out or confused. But he only had his B12 (a years worth in one go) 5 months ago so we assumed that this time it is highly unlikely to be due to B12 and we have both been quite scared by it all. Your post has given me hope that it is not as serious as I feared (google searches are not a good idea when you are worried!). I shall show this to my hubby's Dr to see what he says. Thank you.

[maridunian in reply to KylaTaff]

I would get your husbands GP to investigate whether he has Myasthenia Gravis.

I had ptosis, and got referred to an eye specialist who found no problem with my eyes but sent a blood sample to Oxford for testing. He warned me that it might take upto 3 months to get the results.

Two months later I saw the eye specialist again and he said that I had tested positive for MG. I saw the neurologist that sameday who confirmed i had Generalised MG not Optical MG as my ptosis had gone by then.

It was only then that I realised that the problem with swallowing and slurred speech was due to MG.

I started taking the drugs prescribed that January 2018, saw the neurologist every week for a month then every three months until i now see him every 12 months as my MG was brought under control very quickly.

I still have B12 injections every 10 weeks

[KylaTaff in reply to maridunian]

Thanks for the reply. To be honest the ptosis, the slurred speech, tiredness etc had me panicking that it was due to a stroke. This has eased my mind somewhat I must say. He is due to have his bloods taken Monday but I think it's for the usual tests, now we are aware of MG we shall definitely be requesting the others.

Thank you