Symptoms seem to be returning, it has definitely hit me this week with the brain fog, sensitivity to light, no focus/concentration, and legarthy (just woken from a 12 hour sleep, and could quite easily roll back over!). I'm 6 weeks from my injection now. With another 6wks to go.
On my last post doc wanted to check b12 levels to see how I was holding it after injection, when I explained that it doesn't necessarily mean I could use the b12 in my blood. (Came back just over 1700). I mentioned the mma test and it's not one she can offer, but is trying to find out where I could have it done and is ringing me back next week.
I've just bought some b12 patches from amazon, and wondering if I start taking these will it affect an mma test result?
Not sure if and when I will get to have the test, but don't want to start taking them if I end up having it in the next few weeks and it will skew result.
Thanks.
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Bowtruckle
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Unfortunately any form of high dose supplementation can affect the tests - including skin patches just because it means more B12 getting in to your blood.
In theory MMA is about measuring whether there is enough getting through to your cells so if the suspicion is that you have a functional deficiency then supplementation might not matter - however, if the supplementation is reducing your symptoms then that would seem to be keeping your levels high enough to be beating whatever is causing the functional deficiency.
I believe MMA does respond quite quickly to changes in amounts available at the cell level so it might work to use for a while and then stop before the test but it really depends on how the supplementation is changing the levels in your blood - where they are after supplementation and how long they are taking to reduce after the supplementation - something that you can only really speculate about.
Bottom line is that if you want to be sure of what is going on then you probably shouldn't supplement at all.
Sorry but don't think there are going to be any clear answers on this one.
Thanks for the reply. It's more that Im trying to convince the doctor that i need the injections more often, that I am trying to prove that what my serum levels are is irrelevant if the b12 isn't getting to my cells.
I was tempted to try just one patch and see if I noticed a difference and how long that difference lasts, (not expecting it to last more than 1 week with 1000mg patch).
I know it's going to be more of a trial and error as to what works for me.
I might just wait until I've spoken to the doc early next week and see how long id have to wait for the test before I take any.
Hi again Bowtruckle. See my first reply and...I wrote a log reply to another forum member who is trying to get treatment...some of it will be relevant to you...but most relevant, there are lots of links at the bottom of the reply that provide evidence to support your request for more frequent injections...which as I've said, you should be having anyway.
Also see my add response in the string...it's about subacute combined degeneration of the spinal cord...that should most certainly convince your GP to treat you 😄
Here's a link to the post (sorry to do it like this but I'm quit short of time and I wanted to get something to you):
I've looked at your previous post and it look like you have neurological symptoms: you should therefore be having the intensive neurological regime of treatment for B12 defunciency - and your GP may not have heard of this.
This is really important since under treated B12 deficiency can potentially result in irreversible neurological damage. Again, your GP may not know this.
You should have had 6 x 1mg Hydroxocobalamin on alternate days (the loading doses - given to bring B12 levels up quickly) then an injection every other day until no further improvement - for up to two years.
Your GP will have a copy on her desk so she can look it up - it's the second item down so she may have to read further than usual.
Your GP may say ah ha...but you don't have macrocytic anaemia or PA so it doesn't apply to you. That's a moot point because the treatment is the same for both: B12 injections.
The MMA test is likely to be skewed because you have already had the B12 injections. And anyway, your GP should be treating your symptoms, not your blood results. If your symptoms are returning before your next injection, it's a sure indicator that you need more frequent injections.
And you should be having them anyway (because of your neurological symptoms).
If you read the information provided in all the links in the third pinned post (most of them are quite short so easy to assimilate) you will find enough evidence there to take to your GP and (hopefully) convince her to prescribe B12 injections very other day.
Please post again if your GP is reluctant to prescribe the intensive regime of B12 injections or if you need any further advice or help with this.
I think I mentioned in the last one, that when I was first diagnosed, I only mentioned to her about the tiredness, no naturally she didn't know I had neurological symptoms. I only mentioned these after I started realising that the injections weren't lasting as long as to begin with. I didn't realise half of my 'quirks' could actually be symptoms. After showing her the symptoms list there was some she admitted she didn't realise were symptoms either. So a learning curve for us both.
I did say to her that although I didn't think my symptoms were really bad, (compared to some) I can still function okay most days, but that I didn't want them to get any worse.
I think I will print some more info regarding the treatment for neurological symptoms and speak to her when she rings. I can always post the information to her.
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