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Everything posted by dianne.fraser

  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
  16. There are a lot of elements to my fatigue - I have no thirst and didn't drink much for most of my life, so I guess I used to be permanently dehydrated (which would be expected to cause fatigue) - my fatigue levels dropped when I started scheduling fluids, and drinking them down even if it made me gag; I'm much more fatigued if I eat too many carbohydrates, but it took a long time to work out I needed to cut them back a LONG way - again, my fatigue levels dropped when my diet was adjusted; my gut never worked well, but improved out-of-sight on a much lower-carb diet - this also seemed to reduce my fatigue levels; when my coat-hanger pain is untreated, my fatigue levels are off the charts - when it returns, I see my physio and osteopath as quickly as possible. My fatigue levels go through the roof if I fail to rest enough or if I do too much physical activity or if I eat the wrong thing. If my fatige levels are too high for too long, and I'm cold and forgetful, I usually have the anaemia of chronic disease - for me it resolves with bedrest. In general, my fatigue levels stay low as long as I'm avoiding things that aggravate my illness, doing the things that soothe my illness and treating the symptoms that are treatable. Dianne
  17. Songcanary - my temperature drops too, and I bring it up by laying in a hot bath. When I'm constantly cold, it usually means I'm anaemic. I get the anaemia of chronic disease when my illness is aggravated - not treated with iron supplements, but with bedrest. Dianne
  18. K'smom - I'm so sorry to hear of what you're going through right now. I had a general anaesthetic a few years ago, and had a lot of trouble waking up afterwards. Last week I had a twilight sedation to have a tooth removed. My heart rate and blood pressure stayed stable, but my body temperature dropped and stayed low, even though the anaesthetist took precautions - I was covered with a plastic sheet during surgery, with warm air being pumped in to keep me warm, and the IV solution had been warmed. You and your daughter are both in my prayers. Dianne
  19. Lieze - you are in my thoughts and prayers. I'm hoping that you get precisely the care, support and nurturing you need. Dianne
  20. Tinks - if your doctor feels you would benefit from a specialist appointment, then it might be a good idea to go with it. The change in your bowel movements might be caused by your dysautonomia, but it really might be a good idea to have it checked out. There will always people who are better off and worse off than you, but its important that you get the medical care you need, and your doctor is suggesting that you need to see a gastroenterologist. You might feel embarrassed by your symptoms, but I'll bet your gastroenterologist has heard it all before (and then some) and will know of a range of possible causes and be able to suggest treatment options. Re the irregularity of our brain functioning - most of us, after a while, are able to identify the things that aggravate our dysautonomia and the things that soothe it, and some people on the forum have identified, and are managing, the underlying cause of their dysautonomia eg there are people with underlying MCAD or Lime disease or common variable immune deficiency, who have found that by managing the underlying disease, their dysautonomia becomes more managable. Dianne
  21. Tinks - this might be something to take up with a gastroenterologist, particularly if you have persistent pain with your bowel movements. When my gut started working, the pain I experienced subsided after a month or so. And my bowel movements might be big, but I wouldn't describe them as rhinoceros droppings. You are sensing that something isn't right - follow your instincts, and think about seeking specialist advice. Good luck. Dianne
  22. EEK - Tinks, the same thing happens to me. After a lifetime of constipation, I lowered my carb intake last year and now my experience is more like yours.... If its not related to your diet, maybe its a side-effect of a new medication?? Dianne
  23. Jennifer I often used to wake at night after something hit me in the face, only to find that it was a completely lifeless arm that had whacked me as I rolled over in my sleep. It usually took a few minutes of shaking and massaging to start getting any feeling back, and it was painful.... It stopped when I started getting treatment from a physiotherapist and an osteopath. Now, at the first sign of numbness or tingling in my hands (or neck soreness or soreness at the back of my head), I make appointments with my bodyworkers. Works like a charm for me. Dianne
  24. Dizzy - also look at the fatty acid oxidation disorders - these can also impact on exercise tolerance. I wish you could see my metabolic specialist - she was fabulous, but she's here in Australia. I think she'd be in heaven if she had a steady stream of patients from the Forum.... Good luck with your search - let us all know where it takes you. Dianne
  25. Dizzy I've been referred to an adult genetic metabolic diseases service by a metabolic specialist who has queried whether I might have one of a couple of conditions, including one of 'the rarer glycogen storage disorders'. I've read up on them, and the only one that fits for me and my family is GSDVII (also known as Tarui). Tarui is characterised by exercise and carb intolerance, but there are a number of sub-types with different characteristics. Some affected people have muscle cramps and pain after exercise; others experience general weakness; there have been reports of people with 'late onset' Tarui who experience slowly progressive weakness leading to severe disability in daily life. Does that sound like dysautonomia to you? I can't find any mention of a link between the two in the literature, or any study of physiological damage caused by unmanaged Tarui. Its also been found that there is a build-up of stuff in the blood after exercise (eg ammonia) which disperses with bedrest. You recover with bedrest?? So do I. For the first few times after I discovered bedrest, I would bounce out of bed after two weeks thinking I was cured, and immediately exercise.... I was so baffled to find myself going downhill each time. An old but interesting article on GSDVII is 'Phosphofructokinase deficiency; past, present and future' by Nakajima et al (2002) - I don't know how to create links, but you can google it. This is the rarest of the GSDs, and I think its improbable that I have it, but I need to have it ruled out, not just for me but also for the others in my family who have abnormal fatigue and abnormal response to exercise. My appointment at the genetic metabolic diseases unit is March 2 (next week). Dianne
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