I can comment on a couple of issues here, firstly, whilst in A & E in 2002 (from immediately following my head and neck injury) laying on my back in the cubicle, I experienced an electric shock type episode. It was like an sharp electric shock from the top of my brain right down to my toe, sudden, intense and over in a flash, as I say from top to toe. I found out these were called Myoclonic Jerks. These I continued to experience, usually when laying relaxing, for many many months. I rarely get them now (but there again I don’t lay down). What I do get now, is something that feels very similar but not as intense and it only affects one limb, be it an arm or a leg and this can happen at any time night or day. My mum’s cousin’s daughter had Multiple Sclerosis and I remember her legs and arms used to jerk in a similar fashion (but a lot more often than mine do) – further adding to Dr Diana’s Theory of a possible relationship between EDS and MS. (I was diagnosed with EDS a couple of years ago).
Secondly, with regard to your enquiry as to whether anyone else had a diagnosis of limb neuropathy, I went down to London in 2004 for Autonomic Testing at our UK Referral Unit at UCLH, after suffering intermittently purple painful legs and becoming unable to walk and the NHS weren’t doing anything to help me. I paid a small fortune for a full suite of tests, lasting 5 days, as an inpatient. How glad I was that I went, for they spotted several problems, as follows:
1. Postural Orthostatic Tachycardia Syndrome (POTS)- with exercise & remaining upright.
2. Peripheral Vestibular Dysfunction – causing my balance issues.
3. Mild Radiculopathy in my right leg following EMG needle tests in my muscles,
showing “Mild Excess of polyphasic units of normal or increased duration”, also
“Some rather large units recruiting early”, another leg muscle showed
“Occasional Polyphasic units”.
They also spotted thermo-recognition problems in my right lower limb and called
this ‘Small Fibre Neuropathy’. An explanation, at last!
I do know I felt very well indeed, in comparison to before, following the 5 days bedrest!!
Don’t know if there’s any significance in this but my blood tests showed that my cholesterol was on the high side but that my ‘good’ cholesterol the HDL, was high too, so this gave me an advantage (and reduced any risk). Additionally, they noticed my ‘C-Reactive Protein’, which is an inflammation marker, was above normal.