expertpanda Posted June 17, 2012 Report Share Posted June 17, 2012 hello i have some type of unexplainable nerve damage in my entire body. doing everything from holding objects, walking, talking, and eating is incrediably painful although i was diagnosed with nerve damage in my vocal chord, doctors have been unable to explain the rest of my body i was thinking of joining a support group but im not sure which one, i dont even know what i have. a lot of support groups tell you to have faith in god many other groups tell you to heal by doing good deeds for others during my painful paralysis i read atlas shrugged and decided i'd like this to be my support group when i walk and it hurts, i think of john galt naked being electrocuted but never compromising, never give up, never surrender. although i can't feel comfortable in my body like john galt, he is my inspiration to use my arms. to type this. to withstand the pain and achieve greatness AbsoluteReason 1 Quote Link to comment Share on other sites More sharing options...
bluecherry Posted June 17, 2012 Report Share Posted June 17, 2012 I'm sorry to hear about your condition. Has nothing come up on internet searches either? I hope you will keep looking since sometimes people need to go to lots of doctors and do lots of searches, but eventually they do get the right diagnosis. I'm glad to hear you've found Atlas Shrugged to be inspirational and you would certainly be welcome here if you wish to participate. We do have some other members around here with long term medical conditions they are dealing with too, though we've never had any kind of specific support groups for such things. If you need a more formal support group though perhaps somebody here will know of a good non-religious, non-altruistic focused group. Quote Link to comment Share on other sites More sharing options...
expertpanda Posted June 17, 2012 Author Report Share Posted June 17, 2012 yes i spend a lot of time researching possible diagnosis. in fact, it's an obsession Quote Link to comment Share on other sites More sharing options...
Eiuol Posted June 17, 2012 Report Share Posted June 17, 2012 Atlas Shrugged is something I indeed find inspirational, and I like to hear others say the same. I'm wondering, what sort of doctors have you tried contacting? Quote Link to comment Share on other sites More sharing options...
expertpanda Posted June 18, 2012 Author Report Share Posted June 18, 2012 well i have gi and throat symtoms in addition to arm/spine pain, -internist -2 gastros -3rd gastro at colombia specialized in celiac disease (which i have but does not explain this) -neurologist -rheumatologist -natruopath diet guy -pain doctor who gave me topamax which i didn't like -2 ENTs i'm seeing a new neurologist soon and have more tests to do so hope is not lost yet Quote Link to comment Share on other sites More sharing options...
Eiuol Posted June 18, 2012 Report Share Posted June 18, 2012 What I meant by what sort is if you went to some in-state doctors, or if you went for something like contacting neurologists are other people at well-known hospitals or universities. I'm sure a medical mystery like this is very stressful, but from what I know of doctors in general, there must be someone out there working on research at least indirectly related to your condition. Quote Link to comment Share on other sites More sharing options...
Sirius1 Posted June 18, 2012 Report Share Posted June 18, 2012 (edited) What is your research strategy? What have you learned so far? Edited June 18, 2012 by Sirius1 Quote Link to comment Share on other sites More sharing options...
whYNOT Posted June 18, 2012 Report Share Posted June 18, 2012 hello during my painful paralysis i read atlas shrugged and decided i'd like this to be my support group when i walk and it hurts, i think of john galt naked being electrocuted but never compromising, never give up, never surrender. although i can't feel comfortable in my body like john galt, he is my inspiration to use my arms. to type this. to withstand the pain and achieve greatness Hi, and welcome! With your - what Ayn Rand called - "sense of life", you are an inspiration to me, as well. I wish you all the best. Quote Link to comment Share on other sites More sharing options...
JMeganSnow Posted June 19, 2012 Report Share Posted June 19, 2012 well i have gi and throat symtoms in addition to arm/spine pain, Have you read Wheat Belly by Dr. Davis? It's possible your problems are related to diet. I advise reading this book and then giving up wheat and all wheat products for at least a month to see if any of your symptoms improve. Quote Link to comment Share on other sites More sharing options...
expertpanda Posted June 20, 2012 Author Report Share Posted June 20, 2012 (edited) JMeganSnow, i've been gluten free for a couple of months. i only eat organic vegs, fruit, chicken, and fish with no sauce or man-made product (edit: except prunes) whynot, thanks man sirius1, my plan is to take each possible disease and set it up as a hypothesis. ask myself what would prove beyond a doubt that it is not that. for example MRI of brain disproved multiple sclerosis. I can post my list in a couple days, I want to get a couple more tests I have coming up this week to knock the potentials down a lot. Edited June 20, 2012 by expertpanda Quote Link to comment Share on other sites More sharing options...
ppw Posted June 22, 2012 Report Share Posted June 22, 2012 JMeganSnow, i've been gluten free for a couple of months. i only eat organic vegs, fruit, chicken, and fish with no sauce or man-made product (edit: except prunes) whynot, thanks man sirius1, my plan is to take each possible disease and set it up as a hypothesis. ask myself what would prove beyond a doubt that it is not that. for example MRI of brain disproved multiple sclerosis. I can post my list in a couple days, I want to get a couple more tests I have coming up this week to knock the potentials down a lot. lol. a couple of months. your nervous system is chronically inflamed from years of gorging on O-6's, now you want results now now now. lol. have your brain extracted, placed in a jar, and hooked up to a virtual reality to set your mind free. Quote Link to comment Share on other sites More sharing options...
expertpanda Posted June 22, 2012 Author Report Share Posted June 22, 2012 when i didn't know i had celiac i still ate healthy also the celiac center at colombia says it's not celiac that's doing this to me because my anti-bodies are negative now from the new diet yet symtoms are getting worse am I impatient? yes. but this has been going on for 6-7 months now Quote Link to comment Share on other sites More sharing options...
expertpanda Posted July 11, 2012 Author Report Share Posted July 11, 2012 yo good news everyone. I got a 2nd more expensive lyme test (western blot) and this one came back positive! I may have other viruses/blood parasites from ticks in addition but at least I got a diagnosis that makes sense and started on doxycycline treatment Quote Link to comment Share on other sites More sharing options...
Eiuol Posted July 11, 2012 Report Share Posted July 11, 2012 I may have other viruses/blood parasites from ticks in addition but at least I got a diagnosis that makes sense and started on doxycycline treatment Good news that you found a diagnosis. Quote Link to comment Share on other sites More sharing options...
expertpanda Posted July 31, 2012 Author Report Share Posted July 31, 2012 also add to that a diagnosis of reactive hypoglycemia Quote Link to comment Share on other sites More sharing options...
Modern Athena Posted August 13, 2012 Report Share Posted August 13, 2012 When did this start? I'm not an expert, but I think I can ask my professor (she has a phd in neuroscience). Quote Link to comment Share on other sites More sharing options...
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