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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-08-2014, 03:16 PM | #1 | ||
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Member
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Hi all,
Many of you know me and some of you don't. I am 99% sure I have undiagnosed MG. See my blog for further details as if I write my story here it will be so long it will crash the site! I live with chronic pain and have to take opiate painkillers to be able to get out of bed in the morning ( and deal with other various medical issues). I am having issues with breakthrough pain and I don't want to up my dosages. I am intending on living a long life and don't want to hit 60 and find I'm out of pain medication because I've taken all there is to offer. In the EDS community I have seen several studies recently about the benefit of vitamin D and magnesium in helping reduce chronic ( not acute) pain. I'm interested in trying these alternative routes. However I have a little voice telling me that I have seen somewhere in the last 7 years magnesium is contraindicated in MG. Is this correct or is my brain malfunctioning? Any help would be gratefully received. Thank you Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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05-08-2014, 03:25 PM | #2 | ||
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Newly Joined
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I was told that magnesium can be bad for MG if too high dose. That a typical multi vitamin dose is okay but taking an indiv supplement daily can induce symptoms. Not sure why, but I do everything I possibly can to avoid symptoms.
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05-08-2014, 10:00 PM | #3 | ||
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Grand Magnate
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Eat a banana, some walnuts, or other magnesium rich foods. They're a natural source, less processed, and will do the trick. Unless you have a kidney disorder, eating them will be fine!
Try to have vitamin D, mag food, and calcium at the same time. And don't have it at the same time as vitamin C (at least an hour apart). Vitamin C helps to absorb iron better, but interferes with calcium absorption. Natural oxytocin helps with pain! http://www.apa.org/monitor/feb08/oxytocin.aspx http://io9.com/5925206/10-reasons-wh...e-in-the-world There are a lot of great anti-inflammatory foods (as you know) and natural pain killers. Can you take the occasional acetaminophen? Annie |
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05-08-2014, 10:18 PM | #4 | |||
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This is part of an article on the myasthenia.org website that speaks about magnesium and why it is not recommended for patients with neuromuscular junction disorders.
"Magnesium interferes with neuromuscular transmission by inhibiting release of ACh. 58. Magnesium competitively blocks calcium entry at the motor nerve terminal. There may also be a milder postsynaptic affect. Clinically, hypermagnesemia resembles Lambert-Eaton syndrome more so than autoimmune MG. 59 In addition, magnesium can potentiate the action of neuromuscular blocking agents, which has been emphasized in women who had cesarean section after treatment with Mg++ for preeclampsia. 60,61 Patients with underlying junctional disorders are more sensitive to Mg++-induced weakness. Patients with MG. 62,-64 and Lambert-Eaton syndrome. 65,66 have been reported to exacerbate in the setting of Mg++ use in spite of normal or only mildly elevated serum levels. Typically, increased MG symptoms occur with parenteral magnesium administration, but on occasion is seen with oral use. 66 Therefore, parenteral Mg++ administration should be avoided and oral Mg++ preparations used with caution in patients with known junctional disease (myasthenia gravis, Lambert Eaton syndrome, botulism, etc.)." |
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"Thanks for this!" says: | southblues (05-09-2014) |
05-09-2014, 03:48 AM | #5 | ||
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Member
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Hi,
Thank you all for your responses. I'm just glad that my brain hadn't made the stuff up about magnesium and I was correct to be hesitant. I have been using cinnamon daily for a few months and noticed no difference what so ever. I have it on my porridge in vast amounts as I love the taste. So that's a little disappointing. I have to Google what the UK version of acetaminophen was lol! We know it as paracetamol. I take regular doses of paracetamol as it boosts the uptake of the opiates I take and adds its own painkilling properties into the mix. I've done some further research and it seems to be people with EDS have absorption issues so maybe that's why the medications and the cinnamon aren't working. Just don't really know where to go from here. Increasing my opiates is not a route I currently want to go down as last night with an increased dose I managed two hours sleep. I was also driven crazy by my skin being itchy, affectionately known by me as the morphine itches! I'm going to look at increasing my magnesium intake through my diet and see how I get on. I know its probably going to take a while for it to have any effect. At the moment my pain levels are manageabl 6/10 on a daily basis, where as previously they had been a 2 or 3 out of ten. I will use heat pads etc as I always do to try and help reduce the pain and relax my muscles. Thank you all for responding so quickly Rach xx
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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05-09-2014, 04:01 AM | #6 | ||
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Grand Magnate
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The oxytocin I was referring to is the body's natural hormone that helps to fight pain!! I was not talking about oxycontin, the nasty drug.
Annie |
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05-09-2014, 07:42 AM | #7 | ||
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Member
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Sorry Annie I think you have misunderstood me.
I meant I don't want to increase my opiates as it stops me sleeping, not that I didn't want to take natural oxytocin or that I was mixing it up with Oxycontin. I dont know what the UK equivalent of Oxycontin is. Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." Last edited by rach73; 05-09-2014 at 07:44 AM. Reason: spelling as always! |
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05-09-2014, 08:44 AM | #8 | |||
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Wisest Elder Ever
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This website gives magnesium and other nutrient contents for many foods. Pay attention to the serving size in the upper left hand corner of each page, however.
http://nutritiondata.self.com/ You can also get magnesium lotion now. Morton Epsom lotion. Many of us here use it with success. You can target specific areas of pain or cramping. Or you can rub it into the inner wrists and inner arms for systemic absorption. I've given up on oral supplements since using this wonderful relaxing lotion. It has also lowered my hypertension to manageable levels now. http://www.amazon.com/Morton-Epsom-L...n+epsom+lotion Also at WalMarts. Just rub in a small amount once a day. One bottle lasts me months. It is also very cost effective, much less $$ than oral supplements.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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05-09-2014, 09:32 AM | #9 | ||
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Member
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Thank you the lotion is a brilliant idea x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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05-09-2014, 01:53 PM | #10 | ||
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Grand Magnate
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Rach, I was only clarifying my previous statement, in case you didn't know that the body produces natural oxytocin.
I would like to caution you about any added magnesium, beyond your diet, in case you do have MG. It does act as a muscle relaxer. Do you know what your current levels of magnesium are? While magnesium cream might help, how can you know what dose to use or how much will be absorbed or what effect that might have on you? If you do try anything, please check with your pharmacist to make sure there aren't any interactions with anything else you might be taking. Just being cautious. Annie http://www.ncbi.nlm.nih.gov/pubmed/2385256 http://www.uptodate.com/contents/myasthenic-crisis Older, yet relevant. http://archneur.jamanetwork.com/arti...ticleid=569284 http://neuromuscular.wustl.edu/mtime/mgdrug.html |
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