Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 I'm having trouble typing today so excuse the typos or if I cut this short I'll explain why in here and I know medicos are a foul word here but I have no choice because of the condition I have- sorry. but they are only treating my symptoms, not correcting the cause which is what I am determined to do. I'm melisa, I just turned 26 on 3/5, I have 3 kids and a fiance - keala - age 16 months, lily 3 yrs, amber 8 yrs and corey is my honey. well - I have been pretty healthy mostly other than sinus and allergy troubles. amber and lily were both born preemie. amber wasn’t real early, just a few weeks but she was breech so she was C section. I had trouble after that and a miscarriage and the lily was born at 30 weeks mostly from the scar tissue or so they think. during her birth they of course tried to stop labor with all kinds of drugs. I wasn’t happy about it. finally they shot me with a synthetic adrenal hormone to increase the chances of her lungs to be strong enough. again, not happy. well she and I were both fine. for the next 16 month no troubles. I became pregnant again in spring 04 and had a weird thing with my mouth going "dead" now and then but was told it was a side effect of the antinausea meds I had to be on from how ill I was with morning sickness. ok, not that bad. lily fell ill summer of 04 with OMS - opsoclonus myoclonus syndrome , a fairly rare disorder. its an autoimmune disorder where her body is creating antibodies that attack her brain by mistake since the type of tumor she had is made up of tissue that is almost identical to brain matter so it causes tremors. shes 3 now nd is starting to do better now. shes finally able to walk and stand without falling and shes starting to talk a little but all her milestones have been delayed over this. she's not expected to have drain damage or be retarded. most recover fully and go on to normal lives. right after she was dx I started having weakness in different area, mostly my arms and legs just felt like lead. then after her surgery was over I got a UTI that was a real bugger and they put me on rx after rx which all led to me getting worse not better until I was immobilized in a hospital bed and no one understood why. finally after a dozen rxs I was put on an iv rx and then slowly improved. but never got all the way better again after. now I was falling all the time too, couldn’t move, couldn’t eat since now my jaws just wouldn’t chew and swallowing was often impossible unless it was a liquid and even then I'd choke all the time. drs all had different suggestions and the most common was its "mental" - depression, psychosomatic, anxiety , etc. I knew it wasn’t but I was just the patient, what did my 2 cents mean. to cut out the bs of a year, I grew worse every day, nearly died several times and wasn’t dx until march 2005 by accident with myasthenia gravis. so OMS and MG are both autoimmune, both neurological and both miserable! we got sick almost exactly same time so I feel the drugs they gave while I was in labor play a large role in our both being ill with this junk. did I mention her tumor was on her adrenal gland ?!?!? interesting huh..... well either way. does anyone know anything about either of there disorders? any natural recommendations? the meds the drs have me on is IVIG once a month prednisone mestinon cellcept (well, I start that this week) the supplements I take area- ginseng, lecithin, potassium, calcium, multivit, vits A, C, E nd a sublingual b complex, chelated manganese (not magnesium, very important!), selenium, zinc, green tea extract, acidphilus, and looking for a good omega that’s not fishy. so heres my main issues I'm trying to find more on. I have some but.......any new ideas are very much appreciated! 1- any suggestions for stuff to promote natural energy without a crash when you come down? 2- anything to strengthen nerve transmission especially at the neuromuscular junction? 3- correction of immune function without boosting it? mainly thymus function..... 4- circulation - my veins have become awful. they were great before now they blow every time and are awful to get into. 5- concentration/memory - 6- I want to do a full body cleanse as well but with my meds and condition its trickier than you'd think. ok- so that’s my main interests at the moment. if anyone has suggestions all I can say- I cant have anti cholinergics - that defeats the purpose since I need more acetylcholine and less acetylcholinesterease ----- I cant have magnesium, no way no how! ----- no immune boosters like mushrooms, echinacea and so on. if someone has an idea and you arent sure send it my way anyways, I can find out if I can take it or not. I just really need some ideas here. I can also say things that trigger or worsen MG are stress, heat/cold, illness, infectons, hormonal changes, fatigue..... I'm sure theres more I'm forgetting but those are the most common ones. thanks everyone and I look forward to making new friends and exchanging ideas with youall. hugs melisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I answer one of your other emails but it is simple do a total body cleanse, if you would like to read my story go to www.ginakopera.com , do a live juice fast within one day you will be feeling relief from some symptoms. No matter what ails you you heal it all the same way, the medical field finds the need to put a designer name to everything. I had MS and my son epilepsy all nerve related problems of course my son didn't do a fast but he has done everything else, yes all the flushes. I just make it kid friendly. Gina so heres my main issues I'm trying to find more on. I have some but.......any new ideas are very much appreciated! 1- any suggestions for stuff to promote natural energy without a crash when you come down? 2- anything to strengthen nerve transmission especially at the neuromuscular junction? 3- correction of immune function without boosting it? mainly thymus function..... 4- circulation - my veins have become awful. they were great before now they blow every time and are awful to get into. 5- concentration/memory - 6- I want to do a full body cleanse as well but with my meds and condition its trickier than you'd think. ok- so that’s my main interests at the moment. if anyone has suggestions all I can say- I cant have anti cholinergics - that defeats the purpose since I need more acetylcholine and less acetylcholinesterease ----- I cant have magnesium, no way no how! ----- no immune boosters like mushrooms, echinacea and so on. if someone has an idea and you arent sure send it my way anyways, I can find out if I can take it or not. I just really need some ideas here. I can also say things that trigger or worsen MG are stress, heat/cold, illness, infectons, hormonal changes, fatigue..... I'm sure theres more I'm forgetting but those are the most common ones. thanks everyone and I look forward to making new friends and exchanging ideas with youall. hugs melisa Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
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