Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Hello PLS friends, My name is Jeanne Ann Neff and I'm a new member of this pls club. I am 38 years old and raising a beautiful 8 year old daughter on my own. I'm also an accountant for the State of West Virginia. It took me 7 years, but I finally received a diagnosis of PLS. Not good, but definitely better than not knowing or being told it was all in my head. Sometimes I wonder what neurologists would do without anti-depressants! If you don't fit into their nice little world, they are quick to label you as " crazy. " Anyhow, enough about me. I have a few questions regarding some of my tests and I figured this was the best place to start. 1. Have any of you ever had an EMG with normal results? 2. Have any of you ever had a Spect scan and if so, have you ever heard of " diminished uptake of the thalamus gland. " Mine was but the drs. don't know what it means. If you have any info, please reply and have a " WONDERFUL " day. Your new friend, Jeanne Ann Neff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Jeanne Ann...Welcome aboard. We are glad that you found us and hope you'll consider us your extended family. Although for the most part, we are faceless friends, we all share something in common. You'll be hearing from patients as well as caregivers sharing thoughts, experiences and lending support to those who reach out. Get ready for an e-mail avalanche! My wife was diagnosed with PLS about five years ago and has been in steady but gradual decline ever since. Initially, the adjustment was very difficult for everyone, primarily because we were dealing with so many unknowns. Once things settled in and we accepted the fact that it's here...it ain't gonna go away...so lets get on with our lives and get over it, it got easier to live with. I set out on a mission to learn as much as I could about PLS and discovered the internet to be my best source, as you will too. Eventually, I hooked up with a few other PLS people knowing around out in cyber-space and the list began to grow. Thanks to Mark Weber in Mass., he established this e-mail link and the rest is history. You are absolutely correct about doctors. We've run up against a few of these " better than thou " clowns and immediately disassociated ourselves with them. I've said it before....we are the customers in this scenerio and deserve the right to expect to be treated as such. The really good ones will readily admit they don't have all the answers. It's the ones who expect you to believe they do and get indignant when they are questioned, that you have to watch for. Let's face it, not all of us have medical degrees and the MD lingo can get pretty strange. Please stay in touch. Keep up your search for answers and continue to question what you don't understand. Surround yourself with family and friends who care and understand what you are dealing with. Kind thoughts always.... Doug Brand/St. sburg, FL _______________________________________________________________________________ Subject: Hello PLS friends, From: <PLS-FRIENDSonelist> at ~Internet Date: 7/1/99 8:35 AM Hello PLS friends, My name is Jeanne Ann Neff and I'm a new member of this pls club. I am 38 years old and raising a beautiful 8 year old daughter on my own. I'm also an accountant for the State of West Virginia. It took me 7 years, but I finally received a diagnosis of PLS. Not good, but definitely better than not knowing or being told it was all in my head. Sometimes I wonder what neurologists would do without anti-depressants! If you don't fit into their nice little world, they are quick to label you as " crazy. " Anyhow, enough about me. I have a few questions regarding some of my tests and I figured this was the best place to start. 1. Have any of you ever had an EMG with normal results? 2. Have any of you ever had a Spect scan and if so, have you ever heard of " diminished uptake of the thalamus gland. " Mine was but the drs. don't know what it means. If you have any info, please reply and have a " WONDERFUL " day. Your new friend, Jeanne Ann Neff --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Hi Doug, How's the weather in the Sunshine State. I have a sister in Lake Wales. Thanks for the encouraging words. Take care, Jeanne Ann >>> " Brand " 07/01 2:00 PM >>> Jeanne Ann...Welcome aboard. We are glad that you found us and hope you'll consider us your extended family. Although for the most part, we are faceless friends, we all share something in common. You'll be hearing from patients as well as caregivers sharing thoughts, experiences and lending support to those who reach out. Get ready for an e-mail avalanche! My wife was diagnosed with PLS about five years ago and has been in steady but gradual decline ever since. Initially, the adjustment was very difficult for everyone, primarily because we were dealing with so many unknowns. Once things settled in and we accepted the fact that it's here...it ain't gonna go away...so lets get on with our lives and get over it, it got easier to live with. I set out on a mission to learn as much as I could about PLS and discovered the internet to be my best source, as you will too. Eventually, I hooked up with a few other PLS people knowing around out in cyber-space and the list began to grow. Thanks to Mark Weber in Mass., he established this e-mail link and the rest is history. You are absolutely correct about doctors. We've run up against a few of these " better than thou " clowns and immediately disassociated ourselves with them. I've said it before....we are the customers in this scenerio and deserve the right to expect to be treated as such. The really good ones will readily admit they don't have all the answers. It's the ones who expect you to believe they do and get indignant when they are questioned, that you have to watch for. Let's face it, not all of us have medical degrees and the MD lingo can get pretty strange. Please stay in touch. Keep up your search for answers and continue to question what you don't understand. Surround yourself with family and friends who care and understand what you are dealing with. Kind thoughts always.... Doug Brand/St. sburg, FL _______________________________________________________________________________ Subject: Hello PLS friends, From: <PLS-FRIENDSonelist> at ~Internet Date: 7/1/99 8:35 AM Hello PLS friends, My name is Jeanne Ann Neff and I'm a new member of this pls club. I am 38 years old and raising a beautiful 8 year old daughter on my own. I'm also an accountant for the State of West Virginia. It took me 7 years, but I finally received a diagnosis of PLS. Not good, but definitely better than not knowing or being told it was all in my head. Sometimes I wonder what neurologists would do without anti-depressants! If you don't fit into their nice little world, they are quick to label you as " crazy. " Anyhow, enough about me. I have a few questions regarding some of my tests and I figured this was the best place to start. 1. Have any of you ever had an EMG with normal results? 2. Have any of you ever had a Spect scan and if so, have you ever heard of " diminished uptake of the thalamus gland. " Mine was but the drs. don't know what it means. If you have any info, please reply and have a " WONDERFUL " day. Your new friend, Jeanne Ann Neff --------------------------- Quote Link to comment Share on other sites More sharing options...
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