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Old 12-24-2007, 02:18 PM
numbhands numbhands is offline
Junior Member
 
Join Date: Dec 2007
Posts: 6
15 yr Member
numbhands numbhands is offline
Junior Member
 
Join Date: Dec 2007
Posts: 6
15 yr Member
Default Autonomic Neuropathy by Tshadow

Hi TShadow, I am a new member and have never posted here before. Was looking at the threads last night in search of a doctor for my TOS in Utah since the doctors here are clueless. You are right about the automic neuropathy and should ask a doctor about it in your case. I have TOS but also have had autonomic neuropathy for approx. 20 yrs. and most doctors don't understand it so I learned about it on my own in desperation by doing my own research. Just last month I finally had a doctor, well actually the doctor's physician's assistant, explain autonomic neuropathy to me at my gastroenterologist appointment. He admitted that gastro drs are just now starting to understand all of this! Anyway, I can't believe how much alike we must be personality wise. You see, I am from legal assistant/secretary background and do tons of my own research because over the past 20 yrs. I have learned not to trust doctors, especially the ones who think their god! One thing I learned, due to my own research and trial and error, over the past few months, when it comes to stomach issues from the autonomic neuropathy. That is, like you mentioned, small frequent "Mini" meals every 2 or 3 hours works best for me. I can't even eat a large meal like a full turkey dinner anymore or I get really sick. I eat a protein (like slices of chease or yogurt or nuts) and a serving of fruit or vegetable sticks. I don't eat any bread or pasta or anything that contains wheat because they think I also have a wheat or carbohydrate intolerance. I am starting to think that when you have autonomic disfunction and it takes too long to digest things that flour, wheat, those type of carbs just sit in the stomach or intestines for toolong before they are completely digested and that is why they cause a problem so it may not be an "allergic" thing at all. For some reason GREEN vegies help a lot when my digestion isn't working well. I started eating green sugar snap peas every day and there is something in them that gets rid of my stomach ache when I have a stomach ache starting. Even my daughter who has some autonomic issues says the green pea pods help her. Being the legal type, I am dying to research why, or what nutrient in the pea pods, is eliminating the stomach ache. These are not "snow peas" but stringless green pea pods eaten raw. They are sweet, crunch and delicious! Also, I eat Dannon Activia Yogurt every day for breakfast or a snack. When I stop getting the yogurt good bacteria, my digestion gets worse, diahrea, constipations, IBS, etc. You can also take the good bacteria in capsule form if you hate yogurt. My gastro's assistant also said that the doctors are just now understanding the benefits of the good bacteria for digestion and they handed me a sample packet of "Align" good bacteria capsules at their office. However, I find just one serving of the activia yogurt works well enought. This diet has greatly improved my digestion/stomach symptoms and I have lost a much needed 25 LBS in only 4 1/2 month! Anyway back to the TOS. I have been disabled from my occupation for 2 years due to TOS pain, numbness both hands and arms and both shoulders. Left side is much worse than right. I also have cervical spine issues, degenerative disc disease, herniation C 4/5 from auto accidents which is where the neck pain and TOS all began in 1992. Anyway, I live in Utah and have still not found a good TOS doctor in 2 years and have been living with total hand and arm numbness upon awakening for the past two years. When the numbness leaves after approx. 3 hrs then the pain begins. Now I have days that my left hand and arm are numb all day long. Today I woke up with my left hand numb, swollen and turning reddish purple. It freeks me out when this happens but I can usually get it under control with a good deep tissue massage of the shoulder, upper back and arm areas done by my teenage daughter. I am just waiting for the day that I must go for surgery but don't want to go that route since I have researched it and have heard other patients horror stories. At least I won't go that route until I have found a really good competent TOS neurologist or neuro surgeon. I used to work long hours on a computer all day as a legal assistant to government attorneys and then as executive assistant to a CEO of a large corporation. I spent 8 or 10 hours per day pounding away at the computer because all correspondence was done via email and all meetings scheduled via internet, etc. etc. because it was an international company in over 200 countries. Of course my private disability insurance claim was denied because the insurance company, whom I paid premiums out of my pocket, didn't think I was disabled from my occupation! I am not supposed to even type like this but what the heck my left hand is numb and swollen anyway! I am on health insurance through the state now but I must pay the huge premium even though I don't have a job and have completely lost all my income! Now I must find all new doctors because my old drs are not on my new insurance. At least the Doctors at University of Utah Hospital are on my new plan so I am trying to find a good TOS dr. there but must travel 1 hour to that hospital so it aggravates my TOS even more. Can't find a PT anywhere in my county that can treat TOS. Tried several and they all made it worse. Found a program designed by Peter Edgelow, PT in California (see the American TOS Association website for his info) that is for TOS and he has treated 2000 patients with TOS. No PT's in Utah employ his pogram so I am trying to get the local PT office to purchase his program and train their PT's so I can get help. Can you believe what we will do to get help for this aweful condition?! Take care.
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"Thanks for this!" says:
tshadow (01-29-2008)