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#1
Thu Nov 15, 2012, 09:55 PM
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Cramps
Question from Paul - He seems to be suffering a lot of very painful cramps lately. Wonders if it might be related to his MDS or something completely unrelated. Does anyone else experience cramps?
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process. 
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#2
Thu Nov 15, 2012, 11:38 PM
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He may want to have his magnesium level checked. Low magnesium will cause painful cramps.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#3
Thu Nov 15, 2012, 11:59 PM
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I get cramps from cyclosporine. The doctor tells me to take magnesium oxide to help it. Check with yours. Mine tells me to take all I can. Magnesium is a laxative, so you will learn your limits from experience.
The brand name MagOx was $14 a bottle at my local Walgreens the last time I checked. I am able to buy a generic version at the Cleveland Clinic pharmacy for under $3 a bottle. So it pays to shop around.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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#4
Fri Nov 16, 2012, 03:03 AM
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In a word, yes, but in spells. Potassium, magnesium, and hydration seem to be the best weapons. I would check with Paul's doctor about any of them as they all have downstream impacts. I tend to run low on potassium and notice that when I eat salty foods that i really suffer as potassium is depleted by sodium - they work in an opposite direction by pushing each other out of your body.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#5
Fri Nov 16, 2012, 08:24 AM
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cramps
I used to get very bad cramps before I started on a nutritional program. Caffeine and alcohol would make them worse, but I think they were caused by excess sweating brought about by being anaemic and overexerting myself.
What helped most was this stuff http://new.eletewater.com (I'm not trying to sell it!). Magnesium also helps some people - the Citrate format is supposed to be better tolerated and more effective. I use magnesium oil which you rub onto your skin and is particularly good if you suffer from restless legs. Go for a test if you can, as deficiencies/imbalances of all the electrolytes (calcium, magnesium, potassium, sodium) can cause cramps.
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#7
Fri Nov 16, 2012, 08:23 PM
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I had horrific cramps under my ribs. My doc put me on Mag64 - 2 in the a.m. and 1 at night. I take another otc mag tablet at night as well. No more cramps!
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor!  cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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#8
Fri Nov 30, 2012, 09:17 PM
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cramps
Lori- That's good to know . I may try it. I get cramps all over,including my ribs..... I have read that PNH can cause cramping, so since I have MDS and PNH, I attribute it to the PNH,as no doctor has been able to figure out the cause. I just live with it...
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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