Donna, yes you’re right, people have to find out so much themselves because doctors just don’t know. I have had to figure everything out so far and basically tell the doctors what I think is wrong with me. My brother only found out about his b12 deficiency because he has crohns/colitis and it is a symptom of that. He has to have regular injections of it now. Dr Silver did order a blood test to check for it with me so I think some neuros are more clued up on this.
I am still dizzy/off balance etc but gradually doing a bit more and today seems to have been ok. I started these 5-HTP supplements yesterday so hoping they keep helping. I am increasing to 40mg nori at the weekend too. Like you say, I know this problem won’t be cured but I just want to get to a reasonable standard of living and do some normal things again! I will always live in fear of the vertigo but I just hope we are both heading in the right direction out of this nightmare! x