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About Barbara

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  • Birthday 06/20/1954

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  • Gender
  • Location
    Wakefield, west Yorkshire, England
  • Interests
    Family, Family History Research, Medical Research, Design, Analysis, Radiography, Helping others, Justice.

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  1. Hello Steph Thank you so much for replying. No, never had a tilt-table test, just the basic one-to-one tests with the neurologists, where they do the hammer tests on your reflex points; resistence tests where you have to push against their hands, squeeze their hands etc; put my tongue out, shut my eyes and touch my nose, etc. I asked and paid for for a brain and neck scan which just showed cervical spondylosis. Eventually they referred me for 'Nerve Conduction Studies' when I went to A & E after having the dead arm experience but I didn't get the appointment until some months later. When the numbness started to progress I pleaded with the neurologist, who didn't seem to believe my problems were 'real'. (perish the thought that my symptoms were not following his diagnosis of 'whiplash - temporary symptoms, should get progressively better' !) I said surely they could hook me up to a machine that would show them what was happening to my limbs at night. I couldn't believe his answer (especially as I was paying him privately for the consultation) he said, 'my dear there are many tests I could carry out but I'm not prepared to do so at this juncture'. I was in despair. I started to keep charts and monitor my deterioration but at further consultations he continued with his ' it's all in her head' theory, even told me to stop keeping charts ! In fact I bet him ?10,000 that the symptoms would still be there in a month even if I stopped making charts but he wouldn't accept the bet. However, stupidly, I did as he said and stopped the charts. Guess who would have won the bet ? Still adamant, he eventually wrote to my GP, to say that he didn't think my symptoms to be entirely organic !!! Since then I've asked for second opinion (a very attentive and thorough neurosurgeon) who agreed that my accident had triggered my symptoms but that I would have to learn to live with them as, in his opinion, they were permanent. Although devastated by this news, I felt reassured that at least someone had acknowledged them and additionally he led me to believe they would not get any worse. Then guess what, they did get worse, my GP (bless her for trying!) even sent me for a 3rd opinion, only to be told there was no neurological problem. I think at this point she was starting to doubt me, I asked why no-one could find the cause (or more importantly - stop it getting worse) and she said that my symptoms didn't fit any physiological pattern (at least I think that's what she said). Can I ask, how long have you had POTS ? Can you remember what your first symptoms were ? Can you relate it to any sort of trigger ? Did you find it so difficult to get diagnosed too ? There are lots of other symptoms too which I didn't mention ( because my posting would have ended up a small novel !!). One is, often part of an arm or a leg goes icy cold, (this was worse in the cold weather) and I can't get them warm. In the cooler weather I had to have the heating at 25 degrees night and day, in an effort to get my body temperature back up but quite often it was to no avail. All through spring and part of summer I had to wear two pairs of socks and my legwarmers, even when other people were in shorts ! Do you have this problem ? Thanks again for talking to me. I feel so much better for getting all this out of my system and it's such a relief to find someone who's not trying to usher me out of the door ! Barbara
  2. Hello out there, Two years ago I slipped and fell, hitting the back of my head on a low stone window sill and badly twisting my neck. Since then my health has been slowly deteriorating. Initially my head was numb for about 5 days, then the headache started in a vengence, I was just really dizzy for about 10 days (like being on a ferryboat) and it worsened if I looked up. Other than the bruising, after this initial period all I seemed to be left with was stiff neck and neck/shoulder ache, so I went back to work. Within a month I'd started having tingling sensations in my hand mainly at night, or if I was in a really relaxed state, also pains down my arms if I tried to carry anything. At first the tingling affected just one hand, then the arm, then both arms, then also one leg, then both legs. Soon numbness started affecting the areas that previously had been tingling. Then twice I woke up with 'dead' arms, when there had been nothing restricting the circulation. So now I was suffering from 3 levels of sensory interruption:- - the tingling- (not quite like pins and needles, more like when you're having your blood pressure taken) - the numbness (no feeling but I could still move it); - dead arms (no feeling and couldn't move it either!) To start with these symptoms were intermittent but eventually they seemed to happen every night and the tingling has even been known to affect my lower abdomen, my scalp, my face and my tongue ! scary !! Last summer I started with (again intermittent) swallowing problems, where I have trouble at the top back part of my throat, just with solids, also with breathing problems - which seem to be accompanied with a croakey voice and it's like the bottom of my throat, where you have a little triangle, is being restricted. I also seem to choke very easily on a little drop of saliva from time to time (this can be scary too, as your throat seems to close and it's very difficult to breathe in!). I started with restless leg type feelings, shooting pains then sciatica by the back end of last year. As if this wasn't bad enough, in January this year I awoke with a severe pain in my right calf and up into my groin, it just wouldn't go, I took an aspirin that had been living in my bedside draw for years, it didn't go, I struggled downstairs by which time my face was deathly pale and under my eyes were very blue and also above my lip (aarrgghhh - I thought I was dying!!). Taken by ambulance to A&E with suspected DVT but ultrasound showed it wasn't. A week later a similar thing happened again but without the severe leg pain, just moderate pain this time and a strange fluttering in the ball of my foot, it happened after I'd been sitting still for a while. In the ambulance I felt really sick and had pain under the bottom of my left ribs, I thought I was going to die before I reached hospital - but they discharged me quite soon, saying it was anxiety - I was so scared I daren't go far from the hospital, so I went to stay at my son's who lives close to it. This time the back of my right calf, the ball of my foot and middle three toes went numb for days afterwards but luckily the life's back now. Since then I have had to walk with a zimmer in a morning, I always need a stick during the day, and it's a struggle without a wheelchair if I go out. I am much much worse in a morning, when the pain in my leg is worse. I cannot put my full weight on it as it hurts so much. My leg is often purple. The pain is so bad it makes me cry and only sitting down, or sometimes lying down can ease it. If I've been still for any length of time, this can also trigger it. If I put my foot flat on the floor it makes me feel sick and my chest discomfort starts, also it feels like walking on broken glass up my instep. I have got round this by walking on the outside of my foot only. I also have chest discomfort, palpitations, feelings of nausea regularly, if I become emotional I've had strange 'head' episodes. At night I have terrible trouble getting to sleep as the numbness kicks in within a short time of relaxing. I then wake up within 2 or 3 hours numb or in pain, often gasping for breath and my heart racing, cold and wringing with sweat. In the morning I also wake up with a headache, feeling absolutely exhausted and often fall asleep during the day. My memory seems to be letting me down and very often I struggle in speech to find the right word. My GP has referred me to neurologists, who diagnosed 'whiplash' temporary symptoms, should get progressively better - but it didn't ! (I've had 2 second opinions - neither of whom carried out any different tests - just a physical examination and reflex hammer tests) then a neurosurgeon who said there was nothing he could do, the symptoms were permanent but shouldn't get any worse, I'd just have to learn to live with it, a cardiologist who said no sinister causes, just sinus tachycardia (but at night, and 146BPM!), I've had Nerve Conduction Studies, an MRI head and neck scan, had a 24 hour heart monitor, been on the treadmill, a variety of blood tests. I have been treated by the medical profession as if it's 'in my head' or 'anxiety related' OF COURSE I'M ANXIOUS!!! My working life, social life and family life have been devastated but no-one can agree with a diagnosis. I wept when I stumbled on this web-site. It was such a relief to find I was not alone. It sounds like POTS to me, has anyone out their had these experiences ?
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