Another Battle Begins

It’s funny how a flare up of something that you thought was relatively innocuous can suddenly bring things into sharper focus.

I’ve had a couple of little annoyances over the years, one of which is pins and needles in my outer left thigh when I lie on a hard surface.  A few years ago, I thought it was just that my mattress was too old and too hard and needed to be replaced as it was pinching a nerve somewhere.  So off I went and replaced the mattress with a nice comfy memory foam one.  All good.  I still occasionally had the problem when lying on a hard surface, like the osteopath’s couch but I wasn’t overly concerned about it.

A couple of weeks ago, I started to have the problem again.  It got so bad that I couldn’t sleep on my back any more as the skin on my left leg would effectively go dead from the knee up and when I got up one morning, put weight on the leg and experienced the weirdest, most painful, bout of pins and needles doing a crescendo from the middle of my thigh and radiating across the entire width of the leg down to the knee, I got a little more concerned.  From that point on, there has been distinct lack of skin sensation on that part of my thigh.

Then the “itchy bit” on the inside of my right heel started to play up.  Again, something I’ve had for a number of years, off and on.  On my last visit to the osteopath, I asked her to look at both of these things and check if anything was out of alignment.  There was a slight tilt of the pelvis which could have been pinching a nerve, so everything was loosened, straightened and we agreed to see how it settled.  I had mentioned to her my ongoing battle with my doctor and the endocrinologist and my blood results for B12 and Vitamin D and she tested some of my reflexes.  They weren’t great.  The knee jerk reflex test resulted in my leg swinging like a pendulum instead of jerking and settling.

Subsequently, I went back to my good friend Google and the forums and found out that B12 deficiency can result in nerve damage and produce symptoms like the ones I have experienced.  How can this be?  I’ve been supplementing with high dose B12 sublingual tablets for over six weeks and the deficiency symptoms have lessened considerably.  It’s just that these two incidents have got worse.

Now I’ve gone into a mental circuit – that’s what this does to you.  You start to re-analyse things that you’d put to the back of your head thinking they weren’t important.  I’ve heard from people who can’t get their B12 levels up to an acceptable level even high dosing sublingually.  What if I’m one of them?  OK – so I decide that maybe it’s time to revisit the doctor and ask for B12 injections.  So off I toddle, armed with my “evidence” – he’s hardly going to agree to prescribe if I can’t demonstrate why I think I’ve got this problem is he?

Nope.  He’s not.  Every piece of evidence and advice I produced was met with disbelief and suspicion.  He doesn’t believe it’s a B12 deficiency.  He actually told me he thought I was “barking up the wrong tree on this one” without saying what he thought may be the problem.  Great.  Thanks Doc.  Not.

He now wants to test my B12 levels for himself as it’s obvious he doesn’t trust the results of the test I had done.  He doesn’t seem to be aware that I need to be off B12 supplements for 3-4 weeks before being retested as the supplementation will skew the results.  That’s encouraging isn’t it?  So worst case scenario is that we get the results, they’re in the “normal” (which they will be) and so he refers me to a neurologist.  Until I see the neurologist (current waiting time is 52 days for an appointment) my symptoms will remain untreated.

What sense does this make?  Talking about using a sledgehammer to crack a nut.  A simple course of vitamin injections over the course of a week or two will show something.  If it alleviates the problem, then it’s a deficiency.  Job done.  If it doesn’t then by all means refer on to whomever you want.

I haven’t just pulled this potential diagnosis out of my ass, which is what really winds me up.  I’ve checked, read, researched and rechecked the NHS website, various medical papers, the BMJ website (yes, really).  I have the majority of the symptoms for B12 deficiency.  Even the BCSH guidelines shed doubt on the serum cobalamin test and its efficacy.  So why doesn’t he know this?  Is it because he can’t be arsed?  Is he lazy?  Does he have a god complex?  Or is it because I’m female?  I hate even saying that in print because the idea that my gender has any bearing on this is so utterly abhorrent to me that I cannot begin to express my disgust that this may even be a possibility.

So once again, I’m left with the clear indication that I am going to have to self treat.  Again.  The fact that my self treatment has yielded such good results up until now doesn’t seem to impress a person who’s spent such a large number of years in training for his profession.  At all.

All this makes me sad, angry, frustrated and more than a little depressed.  I’m not claiming to know everything about this – I’m on a voyage of discovery that I shouldn’t have to be making but when you are constantly dismissed and your findings and feelings are being overridden and disregarded, you have no choice but to take up the gauntlet yourself, especially when the professional in whom you are supposed to place your trust seems content to leave you hanging out to dry, feeling like crap, until they find something that can be treated with good old expensive drugs.

No wonder the NHS is in crisis.

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