Every day is a school day when it comes to trying to understand the phantom pain of Multiple Sclerosis And, what is especially fascinating, are the myriad of other symptoms and complaints you discover as you try to refine your search for salient information. For example, I know very little about phantom limb phenomena until I searched for information about phantom pain in MS. The most incredible discovery was the phantom limb phenomena is a symptom that is rarely described in MS. Note the emphasis on “rarely”, which suggest that it is, or has been described as a symptom of multiple sclerosis. However, as I so often do, I have digressed from the focus of this article which was intended to be about phantom pain. Neuropathic Pain The pain associated with multiple sclerosis is a neuropathic pain and sometimes called dysesthesia. Normally, pain is a warning that somewhere in your body damage is being done to the fabric of your being. That paper cut you just made on your thumb is very painful because you have damaged your dermis. When you cut your skin nerve signals were sent to your brain alerting you to the fact that tearing your skin is not a good idea. This is true for all physical pain. However, neuropathic pain is significantly different. Damage to the myelin, the protective sheath around the nerves in the central nervous system (CNS), i causing the normal nerve signals to be disrupted. A useful analogy is to think of your nervous system like the wiring loom in your car. If the wires break, your lights don’t come on. However, if the wires become short-circuited, you get very unpredictable results. When you activate the indicators, the heating comes on, or the horn sounds. The signals are being sent to the wrong destination. Your multiple sclerosis nervous system is a little like that. Nerve signals are being blocked or misrouted. With very unpredictable results. Normally, pain signals originate in the peripheral nervous system to be routed to the central nervous system (your brain) for you to take action. ( take your hand off that hot plate, your skin is burning ). Ouch! Neuropathic pain doesn’t originate in the peripheral nervous system. These phantom signals are all in your mind, quite literally. Nerve signal are flying around your brain all the time. Your brain is a supercomputer, that can sometimes develop problems. When you are first diagnosed with MS, your mind will be in a spin trying to understand what is going wrong in your body. Your GP and your neurologist will be very helpful and give you lots of advice about your condition and what you should expect. It will come as no surprise when they tell you must stop drinking and stop smoking. This reminds me of an unfunny anecdote from my neurologist shortly after my MS diagnosis. My neurologist said to me “I can give you a hundred reason to stop smoking but, MS is not one of them.” He was wrong, MS is most definitely a reason to stop smoking. Even the experts get it wrong sometimes. But, that is not a reason for not seeking medical advice. These days, your GP, neurologist and MS nurse are all very aware of the symptoms of, and the best treatment for multiple sclerosis. If you would like to know more about phantom limb phenomena read https://pubmed.ncbi.nlm.nih.gov/571571/
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AuthorStephen Walker has had MS since 1994. In that time, he has discovered how to live a fulfilling life with multiple sclerosis Archives
February 2022
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