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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-22-2011, 12:02 PM | #11 | ||
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I was 19 and pregnant the first time I had an attack. I really couldn't tell you if my symptoms between attacks are from the periodic paralysis or MS or POTS. It's hard to separate what's what.
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05-22-2011, 03:35 PM | #12 | ||
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Grand Magnate
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http://neuromuscular.wustl.edu/mtime...odic.html#ttox
http://neuromuscular.wustl.edu/msys/mend.htm#thyroid There are so many different types of causes for episodic weakness. Don't only watch for reactions within an hour of eating but hours later, after food reaches the large intestines. You can have delayed reactions with foods in the nightshade family, for example. If you can, take your blood pressure/pulse while these episodes are happening too, if you have a BP cuff. I like the wrist ones, Omron brand specifically. Abby, It may not be "only" a blood glucose issue but it could be that triggering a chemical reaction in the body. The sodium or potassium or calcium/fluid shifting that goes on could be what is going on too. Do you use Benadryl (shifts fluid)? Any meds with Mannitol in them (which can play with fluid, particularly in the brain)? Take a good look at all of your meds. It sounds like this was happening before you took meds though but some might make it worse. Shooting in the dark here. Just wanted to give you more ideas. Annie |
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05-22-2011, 05:00 PM | #13 | ||
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Well, the truth is I'm on HCTZ (as a diuretic to prevent migraines), which I know depletes potassium. In fact, it's used as a treatment for hyPERkalemic periodic paralysis. I have a lab slip to get my potassium levels checked. I'm going to do that any day now. Yes, I am! Tomorrow, even.
I was aware of the hyperthyroid kind of periodic paralysis. I know I'm not hyperthyroid--I get my levels checked every three months, as per my endo's insistence, because I'm a non-compliant patient and stop taking my PTU (thyroid suppressant) when I feel I don't need it any more, because I am terrified of going hypo (I have it in my head that it would put me into a deep depression). I'm getting tested again next week. Anyway, my thyroid levels have been terrific for over a year now. Anyway, I take Imuran, Mestinon, and HCTZ. Other than that, just a multivitamin with iron (Flintstones!) and occasionally ibuprofen. Thanks for the tip about journaling. I will pay attention to food I eat even if the episode doesn't occur immediately afterwards. Right now, my biggest trigger seems to be hormonal shifts at the end of each cycle (dropping progesterone, I guess). Four days before a new cycle starts, I can count on ending up on the floor. This same hormonal shift used to give me horrible migraines, presumably because of water retention (that's why I take HCTZ--works beautifully). Abby |
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05-22-2011, 09:23 PM | #14 | ||
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Quote:
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05-22-2011, 09:33 PM | #15 | ||
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Grand Magnate
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Well, when a doctor says there is no relationship, they are simply not as informed as they could be. The body is one giant biochem factory and fluids/electrolytes are essential to many functions in the body.
Here are only a few sites. Go ahead and Google "women's cycle electrolytes" and see what you find. Then you can show your doctors this info, if they won't be utterly offended by it. www.ijpsr.info/docs/IJPSR10-01-10-04.pdf http://www.ncbi.nlm.nih.gov/pubmed/7431318 |
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05-28-2011, 01:24 PM | #16 | |||
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Abby, I think I have something similar going on. I also have some of these slow falling times without any obvious cause. It is happening less often recently which is good. For me, I think it is a delayed reaction to activity, but there is no consistant time between activity and weakness. I also have this slow falling as a reaction to stress, and in that case it happens quickly, within minutes.
Seperately from that, I am noticing the effects of certain foods, so many I can't name them all. Eating sugar has the most obvious effect, and I have been avoiding sugar most of the time...but when I do eat it I often feel my heart beating in my chest, and sometimes I feel dizzy and nervous, too...and then I crash with exhaustion. I also get bumps in the back of my throat from sugar (and a big list of foods), this is nothing new, I've had this reaction most of my life, an allergic reaction. I also get the same reaction, minus the bumps in my throat, from taking Mestinon in any bigger doses that 1/8th of a pill. I noticed that the heart and nervous reaction to Mestinon and food began after I started taking Mestinon. I am pretty sure there is something bigger going on. One of these days I'll go to the doctor about this issue, but currently I am overwhelmed with too much to even think about it. I hope that makes sense...I don't feel like I can express myself properly today.
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05-28-2011, 10:55 PM | #17 | |||
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)...Aspartame! Check for aspartame on the Flintstones. After I started suspecting Aspartame, I did an internet search and I don't like what I found. I am not sure how much of this information is true, but still I suspect aspartame is not good for anyone, let alone someone with MG. To see for yourself, do a search for "Aspartame myasthenia gravis". I haven't read anything that makes me feel safe eating Aspartame yet, and I don't need it anyway, so I am avoiding it. I hope this is helpful.
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05-28-2011, 11:33 PM | #18 | ||
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Grand Magnate
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http://lsned.com/facts/aspartame-fda/
http://autoimmunediseasesymptoms.com...on-and-disease http://www.ncbi.nlm.nih.gov/pubmed/18850355 If it goes toxic/breaks down in temps above 85 degrees . . . well, our bodies are above 85 degrees. Haven't had this junk for decades. Annie |
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"Thanks for this!" says: | DesertFlower (05-29-2011) |
05-29-2011, 07:27 AM | #19 | ||
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Senior Member
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Wow, thanks. I'll look into it. I never drink diet soda or use artificial sweeteners--except for the vitamins, which I take at supper time, which is typically when the weakness hits. That's a really good lead!
Abby |
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"Thanks for this!" says: | DesertFlower (05-29-2011) |
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