issie Posted March 27, 2013 Report Share Posted March 27, 2013 Interesting. I have a friend that started taking Mestinon and I swear it's affected his memory. He's brilliant - but, I noticed a change when he started this med. Scary, this is one of the things given to some POTS people. I've also read that it can cause some of the problems they are trying to treat ---like with MG. It can cause more weakness - instead of improving it. What are the doctors doing to us? We have to not blindly take things ---question everything and figure out if it makes sense or not. If there isn't scientific proof of a problem --don't create one, by causing more dysfunction in the body with a med. Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 27, 2013 Report Share Posted March 27, 2013 Wow Issie and Raleigh, you're scaring me. I've been on mestinon for a year and I think it's the only med that I believe helps me I can tolerate without major scary side effects. To be honest I haven't noticed any memory impairment...yet.Issie, is there any chance that your friend may be experiencing something totally unrelated?Alex Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 27, 2013 Author Report Share Posted March 27, 2013 They scanned their brains using a technique called diffusion tensor imaging, which highlights the bundles of nerves, or white matter, connecting brain regions. They compared these to scans of 20 veterans who were not deployed in the Gulf.The images indicate that in GWS, these nerve bundles break down and may have trouble forming connections, a phenomenon that has not been associated with any other illness. This suggests that the brain circuitry, rather than any specific brain area, is disrupted in people with the condition. Veterans with the worst symptoms tended to have the most pronounced abnormalities in their white matter.I want this test.What are the doctors doing to us? We have to not blindly take things ---question everything and figure out if it makes sense or not. If there isn't scientific proof of a problem --don't create one, by causing more dysfunction in the body with a med.IssieYUP! Totally agree. Quote Link to comment Share on other sites More sharing options...
issie Posted March 27, 2013 Report Share Posted March 27, 2013 Issie, is there any chance that your friend may be experiencing something totally unrelated? Alex It seemed to be more noticeable, to me, when the med was started. But, there is always another possibility - obviously there was a problem or he wouldn't have started the med in the first place. And, we have to keep in mind ---this is only one study. There are other studies that may say something different. But, it always pays to do our research and count the cost of what long term effects may be. Hoping the best for all of us POTsies --trying to get better. Hope we don't hurt ourselves more. Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 27, 2013 Report Share Posted March 27, 2013 I know exactly where you're coming from Issie. With the amount of research I've done lately ...I can write a book. I bet any one of us can as I'm sure we are all (desperately) trying to put our bits and pieces together.This is one thing of the many I really appreciate about Dinet, we "speak" the same language and we try to share whatever info we think might help others. And you excel at that by far.I'll try to keep track of my functioning neurons ... who knows how many have slipped through the cracks already. Alex Quote Link to comment Share on other sites More sharing options...
issie Posted March 27, 2013 Report Share Posted March 27, 2013 share whatever info we think might help others. And you excel at that by far. I'll try to keep track of my functioning neurons ... who knows how many have slipped through the cracks already. Alex Thanks --I try. Even if it could bring me a lot of criticism - if I put it on here --I think it's important. I wouldn't discount this article either though. Because if there is a question mark ---well, then there is a question mark. If you catch my drift. Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 27, 2013 Report Share Posted March 27, 2013 Worry not Issie,We love you!Alex Quote Link to comment Share on other sites More sharing options...
issie Posted March 28, 2013 Report Share Posted March 28, 2013 Worry not Issie,We love you!Alex (Blush) AWWWW! Thank You!Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2013 Report Share Posted March 29, 2013 My take on this - high stress predisposes people to epigenetic net gene silencing. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2013 Report Share Posted March 29, 2013 Mestinon does not cross the blood brain barrier thus could not I would guess cause central cholinergic (cns) abnormalities and would be ineffective in treating them. many CFS and pots patients do also describe symptoms of impaired cns choline activity. there are other poorly understood cns parasympathetic neurotransmitters. And finally Nancy klimas is a world leader - so far ahead of many on the CFS field. Quote Link to comment Share on other sites More sharing options...
Angela Posted March 29, 2013 Report Share Posted March 29, 2013 so essentially they are saying that gf can cause pots. thats what a "expert" neuro explanation was with, ww2 victims are showing up with ptsd so many years later. i feel like thats ****, we are not (well not most) going thru that i think. so everyone with trauma are going to have ptsd/gf/pots. whatever Quote Link to comment Share on other sites More sharing options...
Angela Posted March 29, 2013 Report Share Posted March 29, 2013 seriously, how many of us/u were air bombed. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2013 Report Share Posted March 29, 2013 Just my take on it. But these symptoms from anticlonergic crisis often sound somewhat similar to what some CFS patients describe:Acute Anticholinergic SyndromePossible effects of anticholinergics include:Ataxia; loss of coordinationDecreased mucus production in the nose and throat; consequent dry, sore throatXerostomia or dry-mouth with possible acceleration of dental cariesCessation of perspiration; consequent decreased epidermal thermal dissipation leading to warm, blotchy, or red skinIncreased body temperaturePupil dilation (mydriasis); consequent sensitivity to bright light (photophobia)Loss of accommodation (loss of focusing ability, blurred vision — cycloplegia)Double-vision (diplopia)Increased heart rate (tachycardia)Tendency to be easily startledUrinary retentionDiminished bowel movement, sometimes ileus - (decreases motility via the vagus nerve)Increased intraocular pressure; dangerous for people with narrow-angle glaucomaShakingPossible effects in the central nervous system resemble those associated with delirium, and may include:ConfusionDisorientationAgitationEuphoria or dysphoriaRespiratory depressionMemory problems[3]Inability to concentrateWandering thoughts; inability to sustain a train of thoughtIncoherent speechIrritabilityMental confusion (brain fog)Wakeful myoclonic jerkingUnusual sensitivity to sudden soundsIllogical thinkingPhotophobiaVisual disturbancesPeriodic flashes of lightPeriodic changes in visual fieldVisual snowRestricted or "tunnel vision"Visual, auditory, or other sensory hallucinations[3]Warping or waving of surfaces and edgesTextured surfaces"Dancing" lines; "spiders", insects; form constantsLifelike objects indistinguishable from realityHallucinated presence of people not actually thereRarely: seizures, coma, and deathOrthostatic hypotension (sudden dropping of systolic blood pressure when standing up suddenly) and significantly increased risk of falls in the elderly population Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2013 Report Share Posted March 29, 2013 This is why ive often wondered whether the neuro component of CFS relates to central (brain) parasympathetic withdrawal or hypofunction. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 29, 2013 Report Share Posted March 29, 2013 Although hallucinations where people see people that arent really there arent often reported LOL Quote Link to comment Share on other sites More sharing options...
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