- Messages
- 27
- Location
- Cornwall, UK
Hi everyone - sorry for jumping right in with no introduction but I could do with some help.
I developed major ME/CFS symptoms in 1998 (although I'd had some symptoms since childhood) but didn't get an official diagnosis till 2002. About 5 years ago I had my mercury amalgam fillings removed and although the results were verging on miraculous and gave me some sort of life back I have still had symptoms that were bad enough to impact on my life in a major way.
Over the last 6-8 months I noticed that the neurological symptoms were getting much worse: pain/numbness/tinging in my hands and feet, vertigo,a feeling of mild electric shock right down my left side, major clumsiness and lack of co-ordination and I also started losing vision in both eyes for up to an hour. The other symptoms of brain fog and extreme fatigue were also increased but not as much as these other symptoms. The left side of my head and face feels like someone is rubbing ice cubes on me.
My gp took it seriously enough to refer me to a neurologist who did a batch of blood tests and arranged an MRI scan on my brain. I am still waiting 2 months later to get access to these blood results and they say they haven't received the brain scans yet. As I'd noticed some of the tests were B12 related I asked the consultant's secretary what my B12 level was. It's 257 so they aren't worried about it. However, I eat a diet rich in all of the things I need so I was kind of 'hmm' at the 257. I don't know if they did MMA or homocysteine tests but I've paid £17 for them to send me the blood test results so I should have them soon.
Because I don't know when I'm going to see the neurologist next I decided to buy some sublingual methylcobalamin (solgar and Jarrow 1000mcg lozenges) and started taking them. On the first day I took 1000mcg and then day 2 I took 2 and then day three I took 3. By day three I had such bad vertigo and my fatigue was extreme. Today is day 4 and I haven't taken any. I can feel the vertigo starting to subside and the fatigue is better but I am starting to get visual disturbance/loss in one eye.
I wasn't aware of methylation and thought it was as simple as just taking a supplement to get better but having googled for side effects of B12 this forum kept coming up so I've joined (hello!).
Should I stop taking methylcobalamin altogether or is it possibly healing symptoms? Although these symptoms are worse something has definitely changed for the better. I can't put my finger on what it is - maybe just that I feel 'straighter' somehow. I haven't had any insomnia (I've been sleeping better) and I haven't had anxiety so is it possible that it isn't methylation related and is just a detox reaction? I'm concerned about reading that methylcobalamin liberates mercury in a way that it can go back into your brain - have I read that wrong? Would I still have mercury in my system like that 5 years after amalgam removal?
Sorry for all the questions - it's stressing me out a bit not knowing if I've set myself back permanently.
I developed major ME/CFS symptoms in 1998 (although I'd had some symptoms since childhood) but didn't get an official diagnosis till 2002. About 5 years ago I had my mercury amalgam fillings removed and although the results were verging on miraculous and gave me some sort of life back I have still had symptoms that were bad enough to impact on my life in a major way.
Over the last 6-8 months I noticed that the neurological symptoms were getting much worse: pain/numbness/tinging in my hands and feet, vertigo,a feeling of mild electric shock right down my left side, major clumsiness and lack of co-ordination and I also started losing vision in both eyes for up to an hour. The other symptoms of brain fog and extreme fatigue were also increased but not as much as these other symptoms. The left side of my head and face feels like someone is rubbing ice cubes on me.
My gp took it seriously enough to refer me to a neurologist who did a batch of blood tests and arranged an MRI scan on my brain. I am still waiting 2 months later to get access to these blood results and they say they haven't received the brain scans yet. As I'd noticed some of the tests were B12 related I asked the consultant's secretary what my B12 level was. It's 257 so they aren't worried about it. However, I eat a diet rich in all of the things I need so I was kind of 'hmm' at the 257. I don't know if they did MMA or homocysteine tests but I've paid £17 for them to send me the blood test results so I should have them soon.
Because I don't know when I'm going to see the neurologist next I decided to buy some sublingual methylcobalamin (solgar and Jarrow 1000mcg lozenges) and started taking them. On the first day I took 1000mcg and then day 2 I took 2 and then day three I took 3. By day three I had such bad vertigo and my fatigue was extreme. Today is day 4 and I haven't taken any. I can feel the vertigo starting to subside and the fatigue is better but I am starting to get visual disturbance/loss in one eye.
I wasn't aware of methylation and thought it was as simple as just taking a supplement to get better but having googled for side effects of B12 this forum kept coming up so I've joined (hello!).
Should I stop taking methylcobalamin altogether or is it possibly healing symptoms? Although these symptoms are worse something has definitely changed for the better. I can't put my finger on what it is - maybe just that I feel 'straighter' somehow. I haven't had any insomnia (I've been sleeping better) and I haven't had anxiety so is it possible that it isn't methylation related and is just a detox reaction? I'm concerned about reading that methylcobalamin liberates mercury in a way that it can go back into your brain - have I read that wrong? Would I still have mercury in my system like that 5 years after amalgam removal?
Sorry for all the questions - it's stressing me out a bit not knowing if I've set myself back permanently.