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Nope, not nosy! 
I had severe RSD, reflex sympathetic dystrophy in my left ankle 3 years ago after a fall and a bad sprained ankle. This is a nasty type of sympathetic dystrophy and may have attributed to my current problems. Apparently, once having any sort of neuropathy, you are more prone to other types of neuropathy. Since I have immune illnesses, it also makes me more prone to neuropathy. It is most severe in both hands and feet and it is progressing towards the trunk of my body, thus they cal it a progressive neuropathy. Its an awful, relenting pain.
Apparently, my adrenal glands are exhausted and since my body is so toxic, they want to flush it out with vitamins and other nutrients, not exactly sure on the whole thing yet but will keep you posted as I learn more.
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Taking it one day at a time.....
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You poor thing! That must be very hard to deal with day to day. All the things that the pain specialist mentioned that were wrong: are they all related somehow? I sure hope the "flushing" works! Sometimes I wish I could somehow flush out all the toxins that must be present in my body, but I'm sure I'd totally destroy any IBS stability I have in the process.
Do you think the IBS is related to any of your other issues? Feel better soon!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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My IBS started when I was 14 or so, I am 36. Other than ibs, I was relatively healthy until about 3 years ago. Pretty much everything I have is ai (autoimmune) related or neuropathy related. They are now understanding that your immune system and gi tract are very much interconnected. My x-rays show a lot of joint damage already from the ra, its amazing how fast this crap can progress! 
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Taking it one day at a time.....
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well, you're obviously a very strong young woman!! Thanks for answering all of my questions. I sure hope this new doctor can help you find some relief! I'll be anxious to hear how it all goes.
Hugs!!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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The back of your hand?? That's rough. I stil; feel the last time I had a stick in the back of my hand, and it was years ago. 
I had to get 30 vials drawn the first visit at the fibro center. I wouldn't have gotten through it if I couldn't squeeze my mom's hand and look away. The worst part is when the awful tech keep saying "the blood just keeps on stopping flowing. Can you do anything to get it started again?" (???!??!!!!)
{{{{{{{{{{HUGS}}}}}}}}}}}} sweetie. I'm wishing you a warm comfy spot and a sugary drink. Annex all the pillows and put your head under the covers to get some you time. And remember to breathe.
~nelly~
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I have to try and keep this short, my hands are killing me. Basically the results from my EMG I had over a month ago with the needle conduction test, showed that I do have a mild, progressive sensory neuropathy. However, the test results do not support my symptoms and physical findings of extreme pain and swelling. Many more symptoms but that is what she was checking for.....
We went around and around, she says I have to give it more time, I tell her I can not live like this any longer. She says the gabapentin can take months just to get the dose right and I have only been on it a couple of months. Its not helping at all!! 
She says my problems are ai related, go back to rheumy. Rheumy has sent me to all these other doctors because she can't help me!!!! Neurologist says some sort of soft, connective tissue disease-go back to rheumy. Agrees that my current rheumy is the best in town (also the second one I have seen.)
Says she can not help at all with the pain, I have to give it more time. Not acceptable to me and she gets upset with me for not listening to her. I repeat back to her, she doesn't know whats wrong, my symptoms do not support her findings and she can only treat the symptoms and it may take months, if ever. She says yes. I again, say not acceptable. Around and around we go.
We agreed that it may be time to go to the Cleveland Clinic. Its the biggest, diagnosing type of hospital near me. So, I see the rheumy April 12, if she doesn't have anything further to add, I am asking to be referred to the Cleveland clinic.
She agrees acupuncture may help but didn't agree with anything else the pain specialist had said. I will continue to go to the pain specialist until I get in at the Cleveland Clinic. Whats it going to hurt?
Speaking of pain clinic, time to go for my physical therapy consult with the specialist. Lets hope this appt goes better!
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Taking it one day at a time.....
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I'm so sorry you're still in so much pain, Michele!! But kudos to you for sticking up for yourself and telling them what you want! That takes guts. I sure hope you get some answers (and some relief) soon!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hi Michele, I read your updates often and my heart really goes out to you. Not many people could handle the pain you are going through. Somehow you do it while supporting everyone else on the boards. I work at a satellite office for the Cleveland Clinic - therapy for kids. It's an awesome hospital and if you end up making the trip I wish you the best. I wish someone had an answer for you already! Hang in there.
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Michele,
I am sorry that these docs cannot seem to help you. You really must still have some fight left in you if you were able to stand up to the doctor and argue like that. I hope you get your referral to the Cleveland Clinic soon. I am wondering what the doctors ever said about prophyria (not sure I remember the spelling)? You googled it and said it seemed to fit in many ways. If you get the Discovery Health Channel, they play this episode of Mystery ER several times a week. Maybe you could watch and see how well it parallels your situation. It seems they have covered everything it could possibly be and the treatments do not work. Are they thinking it's a rare disease at this point? I am praying and hoping the best for you. Please continue to update.
Laura
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So sorry to hear this Michele. How frustrating it must be to have to go in circles with these doctors. You would think that someone could help. I hope you get the referral. Maybe they will be able to help. Until then know that I'm praying for you. Hang in there. You are such a strong woman. I admire you.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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