general inquiry
Hi forum members
Can you help? My GP thinks I am probably a CFS sufferer, but he remains non-committal even though my symptoms and histopathology? are generally consistent with CFS. One of my main symptoms which he says is too ‘focal’ and therefore inconsistent with CFS is a tingling and sore/numb sensation only on my left side from face to foot, which comes and goes. over the past 4 years I have had been checked for MS with no evidence of demyelination. He is now sending me to a neurologist at prince Alfred hospital who apparently specialises in CFS. From my reading I think I would be somewhere in the middle of the severity meter: I tire very easily and feel really weak and wretched on my worst days, but on a good day can get quite a bit done (but not nearly as much as when I was well). Any thoughts, feedback, or advice about what to ask at my Prince of Wales consultation would be appreciated. Here is a little more about my history with this illness.
My constant symptoms are double vision, tingling/soreness all down my left side (fades in and out), tinnitus, and a swaying or swooning feeling when i am on my feet. It is this last symptom that i find most exhausting, and some days i try to just sit still (and write) just to recover enough energy to continue with. Sometimes all the symptoms suddenly intensify in a surge and i feel very unwell like someone has pulled a plug out of me and all my energy has drained out of me in an instant. I had had a very similar episode when I was in my 20s (now in 40s) after a surgery followed by extended courses of antibiotics, followed by a very bad flu followed by all these symptoms. Each time the progression was almost identical, except this time it came with the tingling sensation on one side. i generally feel that i am coping OK psychologically, but as time marches on i am finding hope a little harder to grasp.
Thanks in advance for your help. Also, I’m interested to meet individuals or groups in Sydney.
John M
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Hi John, I also have numbness
Hi John,
I also have numbness down my left side it comes on whenever I stand for me then 5 mins......I believe it is to do with OI .....google orthostatic intolerance(not sure spelling is right) it basically is the inability to remain in an upright postion.....if I sit I must have my legs elevated.......anyway I hope this info is of some use........good luck......Diane
Structural explanation?
Hi John,
Have you taken your body to a cranial osteopath? A lot of what you describe - double vision, swooning, tinnitus, tingling/numbness, post-trauma episode - sounds like classic cranial osteopath territory. I have much the same set of symptoms (except lots of fascial & dural tension in place of the numbness) and they're the only people who've been able to recognise and treat it. Been getting treatment for 6 years and am not "well", but I'm functioning better than I was and am in less pain. Just as importantly, everything I experience has been explained (e.g. swooning is related to the movement of the cranial fluid). My problems probably started before birth (the swooning feeling is one of my earliest memories), and were 35 years old by the time I got treatment - had I been treated as an infant I probably would have been fine.
I have never got any help from GP's, who have long told me that there is nothing wrong with me, or, since I became disabled, that my symptoms are not medical conditions and they can't help me. They always assume my symptoms are psychosomatic and administer platitudes. 99% of them consider cranial osteopathy to be a "belief system" so don't expect a GP to approve of you seeing one. In theory you can get an Extended Primary Care Plan from a GP so Medicare will rebate for 5 treatments per year, but it can be hard to find a GP willing to write the plan.
I bounce between the Northern Beaches and the Central Coast, and attend support groups in both places. Feel free to PM me.
Good luck
Mike