I really hope someone can help me, because none of the doctors I have consulted since the age of 16 have been able or willing to diagnose this problem, and it is making my life a misery. When I was 16, I developed patches of numbness in the skin, first on my back, then on my face, hands and arms. These areas have coalesced over the years to cover my entire body. Before many episodes of further loss of sensation, this has been preceded by a period of tingling or burning. Sometimes a minor viral illness, like a cold, will precipitate a worsening of the problem. Since the age of 27 I have had NO normal sensation anywhere on my body, and the numbness continues to deepen. In the last week, new deterioration has set in, with even the last areas of partial sensation being affected. I am really desperate.
The only other health problem I had when this started was a chronically inflamed appendix, which was removed, and the beginning of unusual and unexplained fatigue. Over the years since I have had numerous tests for MS, SLE, Sjogren's Syndrome, etc. etc. At age 21 I was diagnosed with hypothyroidism. Recently I have switched to a natural thyroid extract, which is slowly improving some problems, but not the numbness, which I suspect is unrelated anyway. At age 30 I was diagnosed (promptly, thank goodness) with pernicious anaemia. I receive regular treatment for this. I was given a working diagnosis of ME/CFS at age 24 in 1989, but my (private, not NHS) ME specialist, who has done a lot of work on this syndrome, says that neither he nor anyone in the group he works with has ever come across or read about this extensive loss of sensation before WITHOUT MS being present. Apart from an 'antibody soup', the only test which has clearly shown a problem was a SPET scan a decade ago, which showed below-normal blood flow in the brain, particularly in the hypothalamus and the cordate nuclei. The scan hasn't been repeated because this was done as part of a one-off ME/CFS research project. A pesticide screen over ten years ago showed an unusually high level of the organochlorine Lindane, or Gamma CHC, in my blood, but I know my exposure to this chemical occurred years after the numbness started.
I think that's about it for my history, except to say I have been advised by a well-meaning doctor not to pursue this enquiry any longer through conventional channels because, "When standard tests fail to show a problem, loss of sensation usually earns the patient a psychiatric diagnosis." An appalling indictment of his professional colleagues, but my experience tells me he is right. I would be so grateful for any helpful suggestions or advice.