4 months ago, i reported to my GP with 90% of the symptoms of PA. I had already done some online researching (as you do) and regardless of the diagnosis b12 supplementing seemed a good idea. So, I was taking some orally. I had blood tests done, which came back (conclusively apparently) to state that I don't have PA. So, I asked for a referral to a neurologist. The wait was 3 months. So I paid to go privately (at a pretty painful cost obviously). I had a brain and spine MRI scan booked (to investigate SACD or myeloneuropathy) The results came back 'normal'. The neurologist also ordered my GP to book blood (homocystene serum level) test AND Methylmalonic acid (urine) test. However, due to the chronic and variety of pain I have been in for this 3 months, I have been paying twice weekly for b12 shots at a 'beauty clinic' (I know). I have informed my GP of this on numerous occasions, but sometimes I swear they just ignore some of the things I say altogether. Anyway, my test results are due back soon I hope. It takes 4-6 weeks for the results of them by the way, as they are sent away. However, also upon reading some information about the urine test, I have read that for MMA, you should either do a 24hr urine test OR you should send off your 2nd sample of the day. NOT your first. No-one told me this. So, I donated my first. So I have a horrible feeling that with that, combined with my b12 IM supplementing, combined with the already low success rate of these tests, my results are going to come back like everything else. 'Normal' or indeed 'skewed-normal'
My Neurologist did recommend that they treat me with b12 shots empirically, prior to my scan, but my surgery had a 'multi-disciplinary' meeting about this and decided that being experts in this field, having X-ray vision, and psychically knowing that I actually, really wasn't suffering that I didn't need it.
However, since my scan results came back normal, and with me still complaining of what I can only describe as unbearable pain, he recommended they prescribe me Gabapentin. A painkiller. That I am supposed to increase the dose of regularly and seemingly exponentially, until I basically can't feel any pain, don't know my name and I guess, possibly end up insane.
Guess what? They prescribed this, no questions asked. Along with the Naproxen and Omeprazole that he tagged on for good measure.
So I'm now taking painkillers to numb the pain (which after 5 days have done nothing, I guess that means I need to double the dose though), strong anti-inflammatory's (to un-inflame parts of me that don't even know they're inflamed. Probably because they aren't) and Omeprazole (to protect my stomach from the unnecessary anti-inflammatories I'm taking). What a world we live in, eh? FYI, I'm not taking the Naproxen. As he prescribed that a couple of weeks ago, and they haven't done a thing either, although I have been told by my GP, that you need to take ALL the prescribed meds. Regularly. to build up the effects.
Ignore the fact that they are just masking the problem. And the fact that I've told them on numerous occasion's that I'm getting b12 shots 'privately' and they are the only thing that in any way has reduced the symptoms i'm suffering at all.
I've heard a lot of bad stories, AND seen a few 'whistleblower' TV programmes in the past few years, accusing doctors of being 'guided' to use drugs that don't so much cure issues, but simply reduce the symptoms or as is in my case just 'mask the pain' not directly treating the real underlying root of the problem, as it creates endless revenue for pharmaceutical companies. And it worries me, that I appear to be witnessing that very thing happening right before my very eyes.
I honestly feel like I'm behind a sheet of soundproof glass, shouting at them what I need and they are just ignoring me, like I'm not really there, and then just posting a prescription to me through a box like a late-night petrol station.
I wish I could make my GP suffer these pains just for ONE day, as I know they think i'm exaggerating.
Well I don't really know what the answer is now. I don't even know if I'm looking for responses to this post. I just felt the need to post somewhere, where I know people understand my pain.
I hope you are all having better luck than me, although we all know we're pretty much in the same boat. P.A. or no P.A. If you're suffering with the plethora of pains that come with b12 linked problem's I'm sure you've all been to hell and back. And back. And back again. Still, if you grab yourself a hot cup of tea and a Gabapentin, I'm sure you'll all feel a whole lot better. Good Luck.
Wow, they do drive you to a pretty extreme level of sarcasm in the end don't they?