So frustrated and anxious: Hi all, I... - Pernicious Anaemi...

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So frustrated and anxious

Noreek profile image
4 Replies

Hi all, I felt I needed to write just to get this offf my chest. I feel so scared and anxious about what is going on. As I posted before my Dr wanted to treat my low (138 pg/mL) B12 with 3 x 50mcg of B12 orally twice a day. I eventually managed to get him to give me one injection a week for three weeks - I did question this, as did the nurse but he was adamant. The day after my first injection the tingling in the left side of my face that I had been feeling returned and was much worse than before but then faded, as the week progressed it returned and today a day after my second inection it is back again and so is my vertigo. I have started worrying that it may be a brain tumor or MS etc...On top of that all of my symptoms are left sided, tingling, sore shoulder, neck ache. So depsite seeing a cardiologist I am scared about heart issues.

How long does this take to start to get better? I have ordered some B12 to inject myself to try to speed up the recovery or at least get to the point where something else can be diagnosed if necessary.

Thanks

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Noreek
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LilliRaindrop profile image
LilliRaindrop

When my treatments began it for me I felt way worse as well, when your levels get back to around they need to be you should feel human again. It gets worse before it gets better. It took a few weeks of mega dosing on my own thanks to sublingual strips. My GP isnt on board with my plan or doesn’t understand. Hope this helps ease your mind a little bit.

Noreek profile image
Noreek in reply to LilliRaindrop

Thanks, I just read yout post history and it sounds quite similar. I even have a bruised foot where I turned my ankle yesterday (Been for x-ray and all clear).

LilliRaindrop profile image
LilliRaindrop in reply to Noreek

It’s definitely a slow process, I know it’s frustrating. And that’s nicely putting it. I found a lot of helpful advice on here (not from the drs) and it helped ease my mind. Mine ended up being bc of my gut. Well we think and nothing is definite yet. There is light at the end of the tunnel. I promise. Just try and be patient (easier said than done) good luck.

Noreek profile image
Noreek

I wanted to follow this up as it is now five months later. I continued to inject my self every two weeks and eventually around Christmas time I considered that my symptoms had all gone. It took a long time to get to that point and I had to go against my GP who insisted that my B12 deficiency was borderline (138 pg/mL) even though I had taken supplements running up to the day the sample was taken.

It was a very scary time but there are some really good resources online, if only the GPs were as aware. The website b12d.org/overview/symptoms was the one that finally convinced me to go against the GP and self inject after I ticked some very specific symptoms on their list.

If anybody else is suffering through a deficiency please dont panic if you don't imporve immediately. It did take time.

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