- Messages
- 27
- Location
- Cornwall, UK
Hi - I managed to convince my GP to try giving me B12 shots. I had the six loading doses (last one 11 days ago) and was expecting her to follow the protocol for people with neurological involvement - i.e 1mg every other day till neurological symptoms stopped improving then once every two months. However, she started me on the protocol for NO neurological involvement i.e. six loading does then every three months. She is now saying she's stopping treatment altogether. I've had several phone calls with her and she's been talking to a neurologist who has said that if the neurological symptoms don't disappear within the first six doses then B12 isn't the issue.
My B12 serum was 257 so it's proving very difficult to get them to even accept that it's an issue. I've asked for MMA and Homocysteine tests and to be referred to a haematologist but am getting nowhere. I'm having my intrinsic factor tested this week as it seems that it was the one antibody test the neurologist I saw didn't bother doing.
Anyway - getting to the point I noticed real relief from symptoms during the loading dose phase - I had a burst of physical energy and mental clarity after the first one, then I started feeling fluey for a few days and by the third one I noticed my breathlessness had gone, I had a massive lift in mood and my stamina was much improved. The feeling that I had a lump in my throat disappeared and I felt like I had the prospect of a life again.
However, only 11 days later and the breathlessness is coming back, my muscles are weak, I feel much less motivation and I'm getting low in mood and paranoid. I'm also having difficulty swallowing properly again. Could it be that the B12 was working as a placebo? Should these symptoms be coming back only 11 days after the loading doses?
I'm taking a Potassium supplement as I noticed that my heartbeat was a bit fluttery and I had chest pains and muscle weakness while I was having the B12 shots.
I'm sorry if this post is all over the place. My brain fog is coming back
ETA - She keeps saying that it's all probably 'just' the M.E/CFS/Fibro and that makes me feel a range of emotions - none of them positive.
My B12 serum was 257 so it's proving very difficult to get them to even accept that it's an issue. I've asked for MMA and Homocysteine tests and to be referred to a haematologist but am getting nowhere. I'm having my intrinsic factor tested this week as it seems that it was the one antibody test the neurologist I saw didn't bother doing.
Anyway - getting to the point I noticed real relief from symptoms during the loading dose phase - I had a burst of physical energy and mental clarity after the first one, then I started feeling fluey for a few days and by the third one I noticed my breathlessness had gone, I had a massive lift in mood and my stamina was much improved. The feeling that I had a lump in my throat disappeared and I felt like I had the prospect of a life again.
However, only 11 days later and the breathlessness is coming back, my muscles are weak, I feel much less motivation and I'm getting low in mood and paranoid. I'm also having difficulty swallowing properly again. Could it be that the B12 was working as a placebo? Should these symptoms be coming back only 11 days after the loading doses?
I'm taking a Potassium supplement as I noticed that my heartbeat was a bit fluttery and I had chest pains and muscle weakness while I was having the B12 shots.
I'm sorry if this post is all over the place. My brain fog is coming back
ETA - She keeps saying that it's all probably 'just' the M.E/CFS/Fibro and that makes me feel a range of emotions - none of them positive.
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