The author's experience of peripheral nerve hyperexcitability.
My symptoms started in 1995 following an attack of cramp in my right thigh. This cramp persisted intermittently for a period of 48 hours. When it finally subsided, I was left with a constant sense of muscular discomfort and soreness that at times became painful. These symptoms affected both my thigh and calf muscles.
Within a short period of time the same symptoms became evident in my left leg, but to a slightly lesser degree. A heightened awareness of these symptoms was always present while at rest. For the most part these symptoms have remained unchanged. However, at times a flare up of the symptoms is experienced and these flare ups can last for various time periods before returning to their normal levels.
Prior to the onset of these symptoms my health had remained good and no association could be made as to what might have triggered PNH.
Despite the best efforts of the medical profession it was approximately 5 years before I was diagnosed with Neuromyotonia (NMT). Since this time I have been treated at the neuroimmunology department of the Walton Centre. Liverpool. (UK).
The intervening years.
Initially my GP suspected that it was symptomatic of recurring back problems having undergone surgery for a prolapsed disc in 1975. This disc protrusion had caused 18 months of sciatica in my right leg so this line of thinking was understandable, and had been my first thoughts as to the possible cause. However, these symptoms bore no resemblance to those I'd experienced when it was clearly apparent that my back was the cause. The most striking difference was that in the past I'd always been able to obtain some relief from the symptoms simply by resting, or adopting a different body position.
Over the next few months while there was no improvement in these symptoms, which where muscular in nature, there was no deterioration either so I concluded that while it was persistent, whatever it was it couldn't be that serious. This state of affairs remained like this for the next two years. One more observation that became clear was the noticeable reduction in the pain or soreness that was affecting the muscles if I could get them to relax. I was prescribed Clonazepam by my GP and I immediately felt an improvement in the symptoms. I was aware that this type of drug is used to relieve anxiety and was also a muscle relaxant. Considering that I'd never had any anxiety about this condition I therefore presumed that the overall improvement was a result of the muscle relaxing qualities. I'd also noticed the same effect with alcohol, also a well known muscle relaxant. While the Clonazepam was effective, it has addictive qualities and the body can soon build up a tolerance that requires an increased dose to achieve the desired result. When this situation started to arise I stopped taking it.
At the end of the first two years and as this condition gradually wore me down I decided to make a conscious effort to find out the cause. I knew it was neuromuscular, persistent but not serious, improved once the muscles where made to relax and appeared to continue through sleep as the symptoms where present and very often worse upon waking. Considering previous back problems although doubting this as the cause, it seemed the obvious area to explore in an attempt to either implicate or eliminate this as the problem. Paying privately I booked an MRI and obtained the films within 3 days, and after seeing my GP I was referred to an orthopaedic surgeon for evaluation. His opinion was that he thought it unlikely that the symptoms where a result of a disc protrusion or nerve entrapment so referred me to a neurologist for further tests.
After a clinical examination and an EMG I was booked in for a muscle biopsy. At the end of these tests the neurologist was still left scratching his head as everything appeared to be normal but he did have the foresight to suggest that I was referred to the Walton Centre By this time it was 1999. While waiting to attend the Walton Centre I had a second opinion from another orthopaedic surgeon. This surgeon was adamant that the cause of my symptoms was my back and suggested surgery. This was carried out in late 1999 and was obviously a complete waste of time.
In early 2000 I gained access to the internet and started to research neuromuscular disorders. I quickly dismissed all of the serious ones and then came upon Benign Fasciculation Syndrome (BFS). While the symptoms of this disorder where very similar to mine they where not quite close enough. Next I came across a few lines on neuromyotonia, the symptoms of which fitted mine almost exactly so I made a note of this condition. After the first clinical examination at the Walton Centre, an initial diagnosis of Neuromyotonia was made, this was later confirmed by more extensive tests.
The point I'm trying to make here is that if used sensibly, the Internet can help to find answers or point in the right direction, but it should be approached with rational thinking. It is all to easy to find the worst possible neurological disorder where twitches are sometimes seen as a symptom and convince yourself this is what you have.