Just read your comment on the swallowing post about vitamin B12. I had no idea about this. My parents have just been diagnosed with very low vitamin B12 - my mother in particular has had dizziness, leg cramps, tiredness, swallowing issues for many years. It was at first put down to arthritis and she was unedr thyroid investigations for a while too as she had a lump in her throat. It now transpires they actually didn’t do a blood test to check for arthritis and her symptoms are related to vit B12 deficiency.
I’m just wandering - maybe I’m clinging onto a false hope. My vitamin B12 though normal was on the lower end (normals 190-660 mine was 220). Could my symptoms be B12 related - particulalrly as Karen mentioned the accuracy of the test. I am vegetarian but do eat dairy and eggs and conciously have things with supplemented vitamin B12. It still wouldn’t perhaps explain pins and needles in my tongue and numbness/ and wrong temperature sense and one sided symptoms and facial pain and spasms/ heat sensitivity and stiffness …
Any words of wisdom. I’m thinking maybe I’ll mention it to my GP and see if he thinks its worth doing another vit B12 test.
It is definitely worth getting another test and pushing for the more detailed tests too. I’m afraid I don’t know precisely what these are, but it shouldn’t be too hard for you to find out before you see your GP so you know what to ask for (very firmly!). Severe B12 deficiency can cause just about any neurological symptom including ON, paresthesia, weakness, spasms, etc, etc. It also causes lesions that look like MS lesions and can be indistinguishable from PPMS, but people with clear remissions probably have something else going on. That doesn’t mean that people who are having remissions shouldn’t get it checked out though - B12 deficiency is common in MS and may be adding to symptoms. Hth. Karen x
You took the words out of my mouth. I do have periods where I feel pretty good and almost normal so to speak so it may not be B12. But on the flip side if there is a chance then a B12 deficiency is treatable. Looks like I have some homework to do.
Hi Reemz- B12 deficiency was one of the first things they picked up on when looking for what was wrong with me. My level was 133 and was then given a series of injections which has now got my level back up, but still lower end of normal. I no longer get the injections, but always ask for my levels to be checked routinely, as I believe if they were once low, then whats to say they will not be low again. Can’t do any harm in keeping an eye on it ,as it can make my MS symptoms feel a lot worse. Unfortunately yes, I do have MS as well. Best wishes Heather
Thank you for your comment. Yes I think my mothers was in the 70’s so she was massively deficient and both her and my father (but he has crohns) are now on lifetime injections. I think its definitely worth re-testing so will take it up with the GP as my next neuro review isn’t for three months and though I’m also being referred to an MS specialist I don’t know when I’ll get seen.
I guess I also need to be practical and realise Vit B12 could be part of it maybe but there’s also the chance that its not or I have something else like MS with it also.
Must be difficult with both - its like a double whammy though one is treatable.
It must have made your diagnostic journey all the more difficult also I guess.