This information was kindly supplied to me by.
Dr I.Hart. Senior lecturer in Neurology.
This study is supported by Dr Hart's research fund. The doctors running this study are not being paid for their involvment.
At this present time a study is being carried out in a joint collaboration involving three research facilities situated in Liverpool and Leeds both in the (UK). with the other being in Israel.
The study title is. "Characterization of autoantibodies associated with peripheral nerve hyperexcitability (PNH)".
This involves the study of the immune system in conditions causing muscle twitching and cramps. It is known that in many patients with PNH the cause is a problem with the immune system which, instead of protecting the body as it should do when functioning normally starts to produce antibodies that bind to parts of the nerve called potassium channels. This results in muscle overactivity causing twitching and cramps. The present tests however, only detect these antibodies in about 40% of patients. The aim of this study is to try to identify whether other, different antibodies can cause PNH and to analyse how these antibodies interfere with nerve function.
This study will involve the creation of a bank of clinical information along with blood and spinal fluid taken from patients with PNH. With this it is intended to find out important information that will improve diagnosis and treatment of PNH and to find out more about why these syndromes happen.
The results of this research should be published in 2007.Update.
Unfortunately the above study could not be concluded and had to cease due to a lack of funding. I believe the research team had made a small discovery and wanted to publish this initial finding. However, before they would go to print, the medical journal in which it would have appeared asked for further intensive EMG investigation to support the early evidence. Regrettably the required EMG work was highly specialised and the research fund couldn't meet the cost. Nevertheless, it is possible that this study could continue at some point in the future and the necessary EMG investigation carried out.
A review of 100 patients with PNH (peripheral nerve hyperexcitability) was carried out in 2008. This revealed some interesting findings with regards to tissue type and different aspects between men and women with PNH.
One clear observation that emerged from this review was that no progression into a more serious disorder had occurred in any one of the case studies. This should be reassuring to anyone who has been newly diagnosed and is worried that this is going to be the case.
I am hoping to receive further details of this review.
There was a small scale study in October 2008 were a number of patients with either Benign Cramp Fasciculation Syndrome (BCFS) or Neuromyotonia (NMT) had their case notes reviewed and were re-tested using EMG. The aim of this study was to investigate why the higher proportion of patients who expressed potassium channel antibodies were those with NMT, as opposed to those with BCFS. As one of the participants in this study I would have received a copy of the results, however, due to the loss of my Neurologist these may now be unattainable.