What to do??

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What to do??

Postby Jaded » Sun May 11, 2014 12:42 pm

Despite the new diet and all that, I have noticed that for the last couple of days, my right leg is buzzing including the sole of my foot. It feels uncomfortable. It was the same leg that I had the most recent relapse and I don't have that much feeling there anyway.

Not sure what to do.....call the neuro? Acceept that this is ms..? :confused:
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Re: What to do??

Postby jimmylegs » Sun May 11, 2014 12:53 pm

arg annoying :S your situation is not the easiest one ever ... what with the beta thing to deal with as well, it could be a neurological issue related to that :S wish testing was not such an ordeal where you are >:P i
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Re: What to do??

Postby Jaded » Sun May 11, 2014 1:21 pm

Yeah, thinking I might take extra B12 for a few days and see what happens....:(
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Re: What to do??

Postby MSandI » Sun May 11, 2014 1:24 pm

Hi Jaded
I too experience this symptom. The only thing that I have found is to get off my feet and lie down either on the bed or on the couch. It seems that the last huge relapse I had 3 years ago left me with this never stopping buzzing feeling. I find it terrible by times, but the only thing is, it is a warning for me to take a break. If I try to work through it without a break, I will regret it at bedtime. When it first started I thought I would go out of my mind. You can try and take a break and see if it works for you. Sitting will not work for me, I have to be lying flat on my back. Good luck
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Re: What to do??

Postby lyndacarol » Sun May 11, 2014 2:11 pm

Jaded wrote:Yeah, thinking I might take extra B12 for a few days and see what happens....:(

Extra B12 will not hurt you – no real side effects, toxicity, or financial negative aspects to it. Jarrow has a sublingual B12 with 1000 mcg (I have read that Jarrow also has a 5000 mcg tablet, but I have not found it.).

Do NOT take a B complex; all the ones I know about have a high level of folic acid, which can mask a B12 deficiency.
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Re: What to do??

Postby Jaded » Sun May 11, 2014 2:25 pm

Thanks. Must admit it's been a busy weekend - I will take note, thanks Anne.

I hear what you say lyndacarol -extra B12 done thanks - but I have low iron so I think I need the folate. My B12 isn't being monitored either. Maybe I should get it checked?
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Re: What to do??

Postby jimmylegs » Sun May 11, 2014 5:09 pm

your diet is pretty awesome jaded, and i know testing has been tough... but if you *can* get serum b12 checked it's definitely on the short list of levels to watch for PwMS. at the same time though, if memory serves, i tend to think you might eat enough fish to be in decent shape though. salmon has about 5 times the b12 of beef, for example!
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Re: What to do??

Postby Jaded » Sun May 11, 2014 10:18 pm

Thanks JL - I will make enquiries. I'll be in touch.
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Re: What to do??

Postby lyndacarol » Mon May 12, 2014 7:26 am

Jaded wrote:I hear what you say lyndacarol -extra B12 done thanks - but I have low iron so I think I need the folate. My B12 isn't being monitored either. Maybe I should get it checked?

Initial testing for a B12 deficiency is usually blood tests (and a urinary methylmalonic acid test); but, in my opinion, this will only give a partial picture. B12 can be broken down and absorbed into the bloodstream BUT there can still be a functional B12 deficiency in the tissues (beyond the blood, if there is a problem in the liver or mitochondria themselves).

In spite of the test results, I think a therapeutic trial of B12 injections could be a better diagnostic tool to ascertain a deficiency.
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Re: What to do??

Postby Jaded » Mon May 12, 2014 12:02 pm

lyndacarol wrote: Initial testing for a B12 deficiency is usually blood tests (and a urinary methylmalonic acid test); but, in my opinion, this will only give a partial picture. B12 can be broken down and absorbed into the bloodstream BUT there can still be a functional B12 deficiency in the tissues (beyond the blood, if there is a problem in the liver or mitochondria themselves).

In spite of the test results, I think a therapeutic trial of B12 injections could be a better diagnostic tool to ascertain a deficiency.


Thanks lyndacarol. That's interesting. I'm going to discuss with the person I am seeing about nutrition.
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Re: What to do??

Postby Jaded » Tue Sep 02, 2014 8:23 am

Hello!

I know it's been a while. I've been busy with cooking, diet, exercising, doing yoga….basically spending all my free time trying to' get better'.

I stopped eating carbs and lectins - beans - which just left a lot of fish, chicken, salad and veg. It got very dull. A nutritionist said they cause inflammation...

I am having another rethink as it seems it hasn't helped the spasticity. And I just can't live on that little variety anymore!

Oh, my bloods got tested recently - B12 was 1330ng/L…..yikes. Had to stop the B12 supps. And had my adrenals tested - yes, exhausted.

I am beginning to wonder if anything works anymore!


J x
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Re: What to do??

Postby Jaded » Fri Sep 05, 2014 6:21 am

Hi Proudmore

I'm good thanks you?

Before giving up the carbs, yes I was here and JL shared a good few recipes and ideas with me.

It's a great idea - perhaps we should have a recipes board?

:)
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