Every silver lining…

Early last year – possibly about 15 or 16 months ago – I had a fall at work and injured my hand and arm.  It wasn’t anything too serious – my hand was strapped up and I was in a sling for a couple of weeks.  After that I noticed that I was having occasional aches in my arm – running down from the elbow to the hand – and that I was having a weird feeling, almost pins and needles, or a half-asleep sensation in my little and ring finger.

This kept going, on and off, over a number of months.

Eventually – when the numbness became more pronounced and more pervasive, with a dulling of sensation in the fingers at all times and aches/pains becoming more frequent (especially when touching anything cold … OUCH!) I went back to the GP.  Her first port of call (quelle surprise) was that it was probably related to my ‘condition’ so would send a letter to my neurologist to ask him to look into it.

A couple of weeks back I realised that nothing had ever happened and that the issue was becoming more pronounced and more annoying (affecting my writing, martial arts, etc) so went back, seeing a different GP this time.  I found out that while a letter was to be written there, somehow, didn’t seem to be a trace of that actually happening.  So, we started again … he was actually more thorough (he booked me in for two appointments, bless him – one to read through my copious notes in advance of actually meeting me :) – the second for the actual consultation) and stated that while it could be related to my genetics it could also be many, many other things so wanted to cover all the bases before moving to the neurology answer.  This included mobility tests there and then, sensitivity tests with needles and tissue (to see if I could tell the difference … I couldn’t), a normal check-up, and blood tests.  Many, many blood tests.

So, last week the results of the tests came back and when I phoned for them on the Monday afternoon I was told they were all clear.  Then yesterday I got a call from the GP asking if I could make an appointment to see him … I said yes, and mentioned next week, he said no and said then and there.  As I was over an hour’s drive away, and it was 6pm, we compromised on first thing in the morning instead.

It seems that while I was told everything was clear there were a few things that weren’t.  Namely my lack of B12 and Folic Acid.  Between Monday evening and Wednesday the GP had contacted my neurologist (who is actually out of the country on vacation but upon getting a message it was about me phoned the GP) and together they decided there was some urgency involved here.

Why, you ask?

Well, I can answer that now, as it was made VERY clear to me this morning: low B12 and Folic (or Folate) levels can affect the body’s ability to produce fully functioning red blood cells … cells that carry oxygen around the body … oxygen that, due to the genetic condition, is already hard to come by for me. Folic acid deficiency may cause fatigue … and due to the genetic condition I am already prone to fatigue which (as it did last year) can lead to complications like respiratory failure.  Both low B12 and Folic Acid also help with nerve related things … and my genetic condition is caused by poor communication between nerves and already weak muscles.

As I said it was made VERY clear why this was more serious than ‘just a vitamin deficiency’ … yes, I said that to the GP :)  He pointed out that you wouldn’t normally get a world class neurologist and a GP talking across continents to discuss immediate treatment for ‘just’ a vitamin deficiency (I have a feeling he may have mocked my ‘just’, you know!).

So, anyway, I was immediately given a barrage of more blood tests to see what else is going on – they’d like to know WHY my body is no longer absorbing B12 and Folic Acid as my diet hasn’t changed so should be giving me enough (he said I’m getting enough just not keeping it / using it correctly).  Eleven vials of my precious red liquid later and I was then given two injections, and have to go for a top up every other day for the next few weeks and then (hopefully) they’ll stretch this to every three months.  The things is that when I asked when this would stopped he seemed to imply it may not … could be this injection for ever :/

My neurologist has already phoned a colleague of his and arranged for me to be seen immediately (they’re contacting me tomorrow or Monday (which I think will be Tuesday as it is a bank holiday) to arrange date next week or early week after to get muscles and nerve conduction checked too … there is a chance that the arm/hand trouble is linked to genetic condition, or to B12/Folic Acid lack leading to nerve damage, or muscle contraction trapping/damaging a nerve.  Basically they don’t know but don’t want to take any chances.

My frequent flyer, platinum loyalty card for all things health related seems to have been used again.

In the meantime I am to turn up every other day to get injected with huge doses of hydroxocobalamin (B12 replacement), I’m to take huge daily doses Folic Acid and I’m to monitor myself for signs/symptoms that are unusual, that are worse than normal, or that come on fast … why is this?  Well, you see, by giving me the huge doses of B12 and Folate they are going to reduce my potassium even more as a side-effect.

And, guess what?

Yes – that’s right … low levels of potassium cause muscle aches, cramps and weakness. Low potassium levels also won’t allow neuromuscular cells to recharge, which prevents them from firing repeatedly.   So, in other words, they are going to make my already wonky muscles, and neuromuscular junctions, even worse! :)

I think that my motto, from now on, should be this: every silver lining has a cloud!!!