Many friends already know much or all of this story, but some people don’t like to ask and I try not to keep going on about it, so here’s a short update as of January 2014 for anybody who wants to know…
What’s wrong with Gavin?
MGUS (Monoclonal Gamopathy of Unknown Significance).
This is a fairly rare condition, my immune system is attacking my nervous system. The myelin sheath which protect my nerves throughout my body is being damaged by rogue antibodies which my own immune system is creating. Nerve signals don’t get through, the myelin sheath is like the insulation on an electric cable. The further from my brain [or possibly fro where the nerves exit my spinal column?] the signal has to travel, the less chance it has of getting through, so I have a “peripheral neuropathy” – the nerve signals to my periphery are failing.
Syptoms started in late summer 2012 with a constant “pins and needles” tingling in my feet. I saw my GP in the autumn and consultants at Southmead Hospital six months later.
My symptoms progressed to a loss of feeling in my feet, loss of muscle control in my feet and eventually ankles. Frends started tonotice that I was limping around September 2013. Tingling spread to my lower legs and started in my hands and lower arms. As the muscles in my feet have stopped responding, they’ve started to waste away – my arches are hollow now and I have little strength in my ankles.
In January 2014 I had “plasma exchange” treatment – my blood was filtered to remve antibodies. The tingling went away, but it only lasted for a couple of weeks and this treatment was classed as a failure.
I was referred to an occuptional therapist and eventually provided with orthoric insoles (which help improve my standing posture and walking gait) and “AFOs” – carbon fibre brackets to keep my feet up – which gave me a blister and haven’t been used much yet.
I was referred to a consutant in London and a drug theropy was recommended. In late August 2014 I was treated with Rituximab; any improvements were expected to take several months to become apparent. By December 2014 I started to notice slight improvement in some symptoms, but initial blood tests show limited effect. More tests and consultant’s opinions are coming in January.
What about the lung thing?
In early 2014 I had a chest scan to look for any signs of lymphoma (it’s linked to MGUS). No lymphoma was found but a small (8mm) lump was apparent on my lung. After further investigation no conclusion was reached and the surgeon removed it by keyhole surgery. After biopsy we know that it was an EHE tumour, possible active but probably benign (we’ll never know for sure). I was out of hospital in a couple of days and fully recovered from the op in a few weeks, the tumour is gone (along with an insignificant strip of lung which has been replaced with a titanium zip) and although I’ll be monitored for many years I’m not expecting anything more to be found.