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About dianne.fraser

  • Birthday 01/12/1965

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  1. Bonbon My illness is periodic paralysis - it is characterised by fluctuating potassium levels. A big hit of carbs can dramatically reduce potassium levels, affecting insulin levels, in turn sending blood sugar high the next day.
  2. I have an underlying neuromuscular disease that has sometimes caused high blood sugar the day after a big intake of carbs - I did a carb challenge to work it out (with the support of my GP, who lent me a glucometer). From there, I went to an endocrinologist who specialised in rare metabolic conditions, then on to a metabolic geneticist (who decided it was a neuromuscular condition), then finally to my current neurologist specialises in my particular illness, and who is providing the right treatment. Our symptoms can seem to make no sense, but the human body is completely logical - you just need to look for the logic. Good luck with working through it.
  3. I've also had breathing issues that were eased with prednisone (including shortness of breath, a feeling as though I was not getting enough oxygen and that my breathing was strained). I recently started treatment for an underlying neuromuscular disease, and the resolution of my breathing issues has been one of the most dramatic outcomes - my breathing feels completely effortless; as though my lungs have been coated in a fine, warm oil, and they are expanding as they should for the first time (since the prednisone...). Good luck with finding your own answers.
  4. Mike I'm really allergic to maize starch, which is often included as a filler in supplements (and medicines). I'm ok with supplements as long as they're maize starch free. You might wish to check on the additional ingredients in the product you used - there may be something in there that disagreed with you.
  5. I'm also thought to have one of the channelopathies - some of the sub-types cause muscle stiffness and they're worthwhile reviewing if you're looking for a cause of your own symptoms. Also look at stiff person's syndrome - I've only heard of one person on the forum being diagnosed, but it might be worth considering.
  6. You might have a problem with the filler in one or more of your medications. I have a maize starch allergy that causes extreme nausea and massive inflammation in my stomach, even at very small doses - maize starch is commonly used as a filler in medications and vitamin pills so, when I must take a pill, I opt for the ones with other fillers.
  7. I've had the feeling of my eyes shivering from side to side - it only happens occasionally, during exacerbations of my illness. My eyes are not actually moving though - my field of vision is shivering because I'm having a small seizure. This might be something to take up with your doctor.
  8. Chaos Periodic paralysis is caused by genetic mutations (around 70 recognised so far). The mutations have to begin somewhere, so while the condition usually runs in families it can also pop up in isolated individuals. Different mutations can present in different ways, and the same mutation can present very differently in families - some people with a particular mutation can be very badly disabled, while others with it might be only slightly affected (eg with mild fatigue, or with very infrequent episodes of muscle weakness or collapse/paralysis). A common trigger across the various mutations is resting after exercise. Although I've been ill since my teenaged years, I didn't start collapsing after exercise til I was around 36-37 years. I've heard of others with the disease who didn't start having episodes of paralysis until their 50's. Apparently lot of people with the disease are very active in their early years, but reach a point where they are pretty much crippled by it - apparently exercise can cause damage, leading to permanent muscle weakness. The important thing about this class of diseases is that they are diagnosable and treatable, but you have to have your potassium checked during an episode - otherwise, pathology results are normal. If anyone wants to be checked for the condition, I suggest that you refer to the physician list on the PPA website - it is better to take it up with a doctor who knows about it, and knows how to assess and treat it. Dianne
  9. Galatea I also get short periods of muscle weakness, but my primary illness is apparently periodic paralysis, a genetic neuromuscular disease - sudden changes in my potassium levels cause episodic muscle weakness, post-exercise collapse, fatigue, and problems with my heart and blood sugar. Some people get episodes of complete paralysis, and some don't (mine only came after exercise). Episodes of paralysis or muscle weakness can last minutes or hours (minutes for me). I recently got a potassium monitor to help manage my illness, and I can see that I get muscle weakness when I'm hyperkalemic - so now I can head it off by eating a carbohydrate snack. I recommend that you take a look at the website of the Periodic Paralysis Association. Dianne
  10. Packers I was sent to a metabolic geneticist because I was occasionally (not always) spiking fasting diabetic blood sugars the day after eating too many carbohydrates - my endocrinologist had thought I might have a genetic metabolic disease. I'm sure there are quite a few conditions that can cause a delayed reaction to carbohydrates but, for me, the geneticist thought it was due to a rare neuromuscular disease that sees sudden changes in potassium levels brought on by (among other things) eating too many carbohydrates the day before. Good luck with finding your own answers. Dianne
  11. Hi. I also get the suffocation feeling, although my body has only ever forgotten to breathe at night during big exacerbations of my illness (apnoea, I guess). I don't know what causes it, but for me its been eased by two drugs: a small dose of lexapro at bedtime (an SSRI - I didn't tolerate it enough to take it daily, but it has helped in the past as a 'single dose' to ease my breathing problems when they've been particularly bad).More recently, I've been put on a calcium channel blocker. Again, I don't tolerate the dose that would normally be given to an adult, but I'm doing much, much better on 15mg three times daily, and my breathing problems have basically resolved (I know when my next dose is due, because I feel as though I'm not getting enough oxygen). I have no idea whether this will be sustained - I've only been on it for around three weeks.Dianne
  12. Yogini This used to happen to me way back when I still exercised - I would slump over about 90 minutes afterwards, but remain completely conscious. Eventually, it was found that my blood pressure was collapsing during my 'slumps', then recovering after 4-5 minutes. More recently, a geneticist has suggested that it is caused by a rare neuromuscular disease that sees sudden changes in my potassium levels - something called periodic hyperkalemic or hypokalemic paralysis. The sudden changes in potassium levels are brought on by a few different things, including resting after exercise. Dianne
  13. Aimes Have you looked into the periodic paralyses? This is a group of rare neuromuscular conditions that see sudden changes in potassium levels causing intermittent muscle weakness or paralysis. I understand that on-off weakness in the arms or legs is common. Can also be characterised by (temporarily) paralysed eyelids on waking. Episodes are brought on by a whole range of things, including resting after exercise or any kind of physical activity, eating too many carbohydrates the day before or cold weather. Apart from muscle weakness and paralysis, there can also be problems with eyesight and speech, muscle pain or abnormal tightness, tingling or spasms, and effects on blood sugar (something to do with the action of potassium on insulin). There can also be effects on breathing and heart-beat. It is only detectable during an acute episode. These conditions are also known as the channelopathies. Dianne
  14. All sorts of illnesses cause musculosketal pain, including abnormal pain post-exercise eg some neuromuscular diseases that result in sudden changes in elecrolytes post exercise, such as the periodic paralyses (they don't necessarily cause paralysis). Most doctors don't know about these rare disorders, but there is plenty of information if you want to do a google search. With best wishes Dianne
  15. Hi. I haven't been on the forum for a long while, although I take a look from time to time, and I thought I'd jump in with this one.... There is a group of rare neuromuscular diseases called hypokalemic periodic paralysis and hyperkalemic periodic paralysis which are characterised by muscle weakness from sudden changes in potassium levels - episodes are commonly brought on by resting after exercise or by eating too many carbohydrates the day before. There is a spectrum of effects from episodes, with paralysis being at an extreme end. The disease is only diagnosable during an acute episode. I saw a metabolic geneticist last year who queried one of these disorders for me - my blood pressure was found to collapse post-exercise (while my heart rate stayed perfectly stable) and my fasting blood sugar was found to spike to diabetic levels during a carbohydrate challenge (I didn't respond to carbohydrates as a diabetic would, but my blood sugar rose dramatically over night). BUT these responses only seemed to be happening periodically, and were becoming rarer as I got older. Apparently this is also consistent with these neuromuscular diseases - you're left with permanent weakness from middle age, but have fewer acute episodes of illness. It might never be confirmed for me - I'm 47 now and I might have had two opportunities in the past 12 months to check the theory (both missed, for various reasons). I still plan to poke at my illness occasionally, with my pathology order form handy so that I can check my electrolytes when I experience an acute episode. Just something for you to think about. With best wishes Dianne
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