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 March 19, 2009, 12:22:53 AM
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Jr. Member
Posts: 18
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I have been disabled for six years due to a variety of named and unnamed, correct and incorrect diagnoses. I had to leave teaching 5th grade due to spasming, fatigue, and pain. My classroom was on the second floor and no elevator. Going up the stairs was a horrible processs. I had to pull myself up the stairs with my arms as my legs couldn't do the job. Near the end I got so tired I couldn't do my school work at night because I would fall asleep after supper. The spasming was scary to the kids. It usually started in my right arm when I would extend my arm to hand out papers. The papers would fall. As time went on I'd spasm body wide. My feet would contract so tightly I wouldn't be able to walk. The last three, almost four years, I've been on crutches. I broke my foot after one of many falls. The crutches help me from falling. I also use a power chair in the house. I've seen about every neurologist in the area without success. All they wanted to do was drug me up and see me in three months. I've been dx with polyneuropathy, autonomic neuropathy, small fiber neuropathy, stiffman's syndrome, fibromyalgia, and having it all in my head. I think I have celiac disease and some form of dystonia. I know I have Hashimoto's thyroiditis, Raynauds, roscea, numbnss, and tingling, and GERDS as well as multiple minor heart problems. I also have dropped feet and am getting AFOs which really make walking much more normal. I am allergic to most medications - lyrica being one - dependent on narcotics so pain relief is a problem. I have spent years being told it's all in your head (IAIYH) simply because the doctors don't or can't figure it out so it looks better on a report to say it's either functional or idiopathic.  I have a few I'm going after once I have my diagnosis which I am hoping will be in about six weeks. I have gone to a specialist who is extremely thorough and takes all systems into consideration. His thinking was as mine, we'll start from scratch. I didn't bring any records. I'm sure some of you know that you can get a reputation for being a nut and because I know there are answers to my problems, I do tend to be persistent. I research a lot and most doctors hate that. This new specialist wasn't intimidated and even complimented me on my knowledge! That was a sure sign he 's a keeper. In about a week and a half when I go back, my primary should have the first report from my specialist. It makes me nervous thinking about it.
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March 19, 2009, 02:20:24 AM
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Group: Administrator
VIP Member
Gender: 
Posts: 921
I Will Be Diagnosed !
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 Feather Wow you have been through hell. A few of these disease/illness I've never heard of so not familiar with the symptoms etc. I'm very excited you've finally found a caring Doctor, don't want to put a downer on it......but please don't get you're hopes up to high as I'm sure you've done in the past only to be hugely disappointed. (sorry I know that really puts a downer on things but) it's mental health we all have to take care of too, as I know you're fully aware...... sorry if that's sounds depressing but I worry when we get our hopes up and it all falls apart yet again, so hope you understand where I'm coming from. BUT.... I'll be positive and pray for you that this Doctor figures it out and helps you after all this time. I'm so happy you found us, feel free to vent and scream all you like, I know how tough some days can be, life in general is a struggle. Do you have close family or friends who offer support ? Please keep us posted on the upcoming appointments. Sammy 
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May 15, 2009, 08:39:11 PM
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Jr. Member
Posts: 18
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I just read the reports from the doctor in NYC and, even though the evidence is there, he does not acknowledge it but refers to other "functional factors". We all know what that means - IAIYH! Okay, I'll admit I was taken from my mother from 3 months to 6 months and was emotionally abused by her. I never knew a mother's love. These things they say produce chronically ill adults. It wasn't my fault. I was the recepient. I didn't do it on purpose. It was done to me. I have been in therapy for years and have made gains. Why am I treated like I'm nuts? Even if I am, am I not a human being in need? How could I decrease significantly the small nerve fibers in the two biopsies they took? What mental response could do something like that? Now I am not looking forward to seeing the movement disorder doctor who probably has been told about me. I have seen a doctor 50 miles away who was suppose to work on my feet and my gait, but instead has taken on my neurological mess. He gave me hope with his enthusiasm. He's getting records just to see what testing has been done. I hope he isn't tainted by what he reads. The NYC doc said my gait and balance were normal. That should make this doctor laugh as he told me my balance was awful and my gait was not good. It's way beyond me. I can't afford to think any more about it. I have to go do something creative!
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