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Firstly, I want to wonder out loud why this site does not have an an entry for Functional Neurological Disorder(FND). This is a very real condition which has many manifestations at present but is, essentially, not a "sin bin" for those functional nervous disorders for which GPs or any other health professionals can not find a cause. FND includes pain, weakness, tremors and other neurological symptoms which are very real to to the person feeling them.
I urge anyone who hasn't looked at the FND Hope site to do so. Also, then please watch the Youtube presentation from Dr. Mark Edwards of St George's Hospital dated April 12th 2019. When I watch that, everything he says there makes me feel understood. He talks at length about GPs and health professionals not understanding very real neurological symptoms and how that very lack of understanding causes subsequent dismissal because one has something which doesn't match a list of illnesses previously on record. Sometimes, he says, money is wasted on too many tests when understanding, then rehabilitation would be most appropriate. Also, he talks about how being dismissed as someone with a psychosomatic (an unhelpful word because of the way people generally perceive it to mean nowadays) condition can have damaging effects to the person, their condition, their family and friends perception of what is wrong with them.
Furthermore he wants more understanding from health professionals, more pathways to send people on tailored towards their rehabilitation. He maintains that, in doing so, more money could be saved in the long run.
For myself, I await an interview for an assessment about getting on to a Pain Management Programme which has renowned success in my city. My problem is this: I do have pain and it can be really bad but the other side of thing for me is weakness. When my pain is less my leg and foot often feel like there is insufficient muscle strength to hold it upright. It will feel like it is leaning to the outside. On other days the muscles in the arch of my foot are very weak and virtually unusable. The weakness scares me more than the pain. A pain management programme exists because it is recognised now that people suffer with chronic pain and the stress about that can make it worse. No programme exists called Weakness Management Programme (outside of those programmes for people with MS or Parkinsons or the like). Maybe it should run concurrently with some Pain Management Programmes? Although I am able to walk for limited times and put up with my disturbing symptoms other people with Functional Neurological Disorders can not and sometimes this has been due to an escalation of their symptoms.
At present, unless you live in London, Bristol, Edinburgh and maybe a few other places, and even then your waiting time may be 8 months no-one will help you or even recognise your problem. You may (most likely) be closed off, dismissed.
I wonder how I could get the moderator of this site to please include Functional Neurological Disorder on their list of topics which could be searched?This would be a start. Awareness is a start. This is what Dr Mark Edwards also believes.
Healthunlocked has an access to a health forum site for FND but getting replies and correspondence is much inferior to the Patient website Forums.
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