Life with a muscle twitching disorder and it's psychological effects .


Inevitably this would vary from person to person and the nature of the symptoms Possibly the first difficulty that might be encountered is obtaining a diagnosis. Often GPs and neurologists might not be familiar with the symptoms of peripheral nerve hyperexcitability. Muscle twitches or twitching where not part of my symptoms from the point of view that I could feel them, so I had trouble trying to portray the nature of what I was experiencing within the muscles. Terms like "bubbles trapped under the skin" or "water trickling down within the leg" are unlikely to help in obtaining a diagnosis, try saying "it feels like a bag of worms under the skin" and watch for the confused look. Observing the twitches can be problematic because of their size and therefore they may go unnoticed, mine where missed during 3 clinical examinations. Had they been noticed I may well have avoided unnecessary spinal surgery. It was not until I was preliminary diagnosed with Neuromyotonia and they was pointed out. that I became visibly aware of them.

Until a confirmed diagnosis can be made the time in between can be frustrating. The inability to talk to someone who can relate to or have any knowledge of what you are experiencing may lead to a feeling of isolation. Once diagnosed the next hurdle to get over is the fact that in all probability PNH will be a lifelong condition, as complete remissions are rarely observed. Given this fact, then dealing with the knowledge that it will be there tomorrow, next week, next month and next year can take some getting used to before accepting it as part of life.
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. The twitches themselves are not, from experience, painful, but due to their invariant nature the effect of them can be. Constant soreness or discomfort affecting the same muscles on a daily basis that persists for years can lead to weariness. When the symptoms cause disrupted sleep, this only serves to fuel fatigue which can prevail throughout the day. Taking these factors into account, mood swings, irritability, impatience, apathy or an absence of enthusiasm may well be experienced as the psychological effects of PNH

Overall, peripheral nerve hyperexcitability be it Neuromyotonia, cramp fasciculation syndrome or benign fasciculation syndrome can have an impact on daily life, although this will vary between each individual case depending on the severity of the symptoms However, PNH is benign and although the symptoms may fluctuate they don't deteriorate into anything more serious and with the correct treatment the symptoms are manageable.