Guest guest Posted June 6, 2012 Report Share Posted June 6, 2012 Hi , I am Judi. I am originally from England, but have lived in Texas. I have Systemic Lupus (white blood cells attacking my own body, Severe pain, Total body fatigue), Reynauds syndrome (changes in skin colour according to stress/heat/cold), Sjorens Syndrome (Cannot tolerate florscent light, sunlight) and Rheumatoid Arthritis (restriction of movement, joint breakdown, pain). I too need friends as I am pretty well isolated these days. Just as a point of interest, ask your doctor to run an ANA test (Auto-immune Nuclear Antibody) Test. Oft times Guillian Barre is a misdiagnosis of Lupus. Judi To: BeingSick Sent: Tuesday, June 5, 2012 2:47 PM Subject: Friendship Hello My name is . I live in Minnesota, USA. I have had Guillian Barre' since 2008. I had a wonderful Dr and Hospital staff. However after three IVIG bags.. they discovered I was algeric to the IVIG. I developed aseptic menengitis (my body attacking me). I would enjoy a new friend. Hope you have a good day, > > Hello everyone, > > i'm a new member and would like to make a friendship. I'm from Middle Esat, educated, have been through difficult times, almost become a solitary woman. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Hi All my name is LMay I have been on this group for a few years but now I have trouble seeing. But I wanted to say hi to all. I live in kansas closer to a better Dr. I am been called back for the second mamo and my parkinsons has flared up along with everything else Hi , I am Judi. I am originally from England, but have lived in Texas. I have Systemic Lupus (white blood cells attacking my own body, Severe pain, Total body fatigue), Reynauds syndrome (changes in skin colour according to stress/heat/cold), Sjorens Syndrome (Cannot tolerate florscent light, sunlight) and Rheumatoid Arthritis (restriction of movement, joint breakdown, pain). I too need friends as I am pretty well isolated these days. Just as a point of interest, ask your doctor to run an ANA test (Auto-immune Nuclear Antibody) Test. Oft times Guillian Barre is a misdiagnosis of Lupus. Judi To: BeingSick Sent: Tuesday, June 5, 2012 2:47 PMSubject: Friendship Hello My name is . I live in Minnesota, USA.I have had Guillian Barre' since 2008. I had a wonderful Dr and Hospital staff. However after three IVIG bags.. they discovered I was algeric to the IVIG. I developed aseptic menengitis (my body attacking me). I would enjoy a new friend.Hope you have a good day, >> Hello everyone,> > i'm a new member and would like to make a friendship. I'm from Middle Esat, educated, have been through difficult times, almost become a solitary woman.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Hi LMay. What a pretty name! It was good to hear you. First thing first, let me give you my regular email as oft times I block from the group if I am really sick or get overwhelmed with emails. judivreed@.... I don't know much about Parkinsons, besides the tremors. I worry @ my husband as his left hand has been shaking horribly for about 5 years now. We are both 56. I am originally from England, but have been here since teenager. Before we get chatting too much, would it be helpful if I wrote in a bigger font? Having to move to another state is ridiculous to get better health care! Unfortunately, I am on Medicaid due to a disability before I was diagnosed with Lupus, and NO DOCTOR wants to accept it. I've been told by Medicare there is NO Rheumatologist in the ENTIRE STATE OF TEXAS!!!!!!! THAT IS ABSURD!! I finally was able to get into one in April, and she diagnosed me with RA, Sjorens Syndrome & Reynauds sydnrome as well, got me on meds, but then she turned around and CLOSED HER PRACTICE TO MOVE BACK TO ARGENTINA!!!! Do you believe that? So, at the moment, I call Medicaid every day, get another list of 'their' doctors, sit and call them all only for them to tell me they don't accept the insurance, are a dentist, or only taking in children with Lupus. In other words, I have no doctor treating me for what could be a life threatening disease! I cannot call all these numbers all the time because, quite honestly, it is exhausting and I just feel too sick to fight with it every day. What do you have to do in order to get proper health care? Move like you did? MY husbands business of 30 years is here, house, grandkids, kids, everything is here! Unfortunately we life right smack dab in the middle of texas, so it is an 8 hour drive any way I go to another state, or else I would do that! So, good to meet you, hope to hear from you soon. Judi From: LMay To: BeingSick Sent: Saturday, June 9, 2012 10:32 AM Subject: Re: Friendship Hi All my name is LMay I have been on this group for a few years but now I have trouble seeing. But I wanted to say hi to all. I live in kansas closer to a better Dr. I am been called back for the second mamo and my parkinsons has flared up along with everything else Hi , I am Judi. I am originally from England, but have lived in Texas. I have Systemic Lupus (white blood cells attacking my own body, Severe pain, Total body fatigue), Reynauds syndrome (changes in skin colour according to stress/heat/cold), Sjorens Syndrome (Cannot tolerate florscent light, sunlight) and Rheumatoid Arthritis (restriction of movement, joint breakdown, pain). I too need friends as I am pretty well isolated these days. Just as a point of interest, ask your doctor to run an ANA test (Auto-immune Nuclear Antibody) Test. Oft times Guillian Barre is a misdiagnosis of Lupus. Judi To: BeingSick Sent: Tuesday, June 5, 2012 2:47 PMSubject: Friendship Hello My name is . I live in Minnesota, USA.I have had Guillian Barre' since 2008. I had a wonderful Dr and Hospital staff. However after three IVIG bags.. they discovered I was algeric to the IVIG. I developed aseptic menengitis (my body attacking me). I would enjoy a new friend.Hope you have a good day, >> Hello everyone,> > i'm a new member and would like to make a friendship. I'm from Middle Esat, educated, have been through difficult times, almost become a solitary woman.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Hi Judi and LMay – and all sorry I have been quiet for so very long... just feeling I guess that being an observer was enough work for now... Fatigue from my M.S. has been pretty high – and I am feeling the stress of preparing for rent recertification big-time. Making sure I have listed all medical expenses for last year, and then having to guess what they will be for next year is always scary. This is one place, though, where having a computer is a HUGE help. I used to have to do everything on ‘green sheets’ – that is, accounting paper with multicolumns. SO upset to hear the trouble you folks are having getting proper medical care! That’s awful, especially in a country bragging about what great benefits we have! And my sis often brags about ‘the great state of Texas’’; I will hear that differently now! I am so very glad to be in Massachusetts, which I think is doing pretty well in meeting medical needs. Granted it may be more expensive to live here, but I’ve not heard of folks having such trouble as you. I have a friend whose husband has Parkinson’s. ‘Tis NOT a good diagnosis to get. I think they have a few medicines for it, but don’t know how effective they are. My best friend had ‘intentional’ or ‘familial’ tremor as did his Mother. That got worse as he aged. But that diagnosis is ‘just’ very annoying. I think it might be a good idea to get that tremor checked, so you will know what you may be facing. A former medical provider developed lupus and had major troubles at first. I think she retired to ‘do art’. She did write a book; here’s a click: http://www.amazon.com/Heartsearch-Toward-Healing-Donna-Talman/dp/1556430728 She’s a pretty remarkable person, so the book might be helpful, even though not new. If you are disabled due to all those illnesses, Judith, are you eligible for Medicare as well as Medicaid?: That might increase the number of potential docs? Or maybe you will just need to find a ‘regular’ doctor who is able and willing to learn about you... sigh.. Some of my most helpful doctors over the past 50 years have not been specialists in my concerns. But probably any doctor that wonderful has a full practice – though would be worth getting on a waiting list for when he/she would again accept a patient. You write very well. I wonder if it would be worthwhile writing your story, making yourself sound like a wonderful agreeable person that any doctor would love to help.... and see if a nearby newspaper might be willing to run it, hopefully to get the eye of a doctor who would thus be open to you? or maybe someone like Dr. Oz, who might fly you to his location and open doors? or ‘The Doctors’? Granted it is perhaps best to try locally as you are doing, but maybe worthwhile to ‘dream big’? You have nothing to lose but time/energy on being one of the many who try best to all, I must get back to rental recertification type work. Jean From: Judith Sent: Saturday, June 09, 2012 11:11 PM To: BeingSick Subject: Re: Friendship Hi LMay. What a pretty name! It was good to hear you. First thing first, let me give you my regular email as oft times I block from the group if I am really sick or get overwhelmed with emails. judivreed@.... I don't know much about Parkinsons, besides the tremors. I worry @ my husband as his left hand has been shaking horribly for about 5 years now. We are both 56. I am originally from England, but have been here since teenager. Before we get chatting too much, would it be helpful if I wrote in a bigger font? Having to move to another state is ridiculous to get better health care! Unfortunately, I am on Medicaid due to a disability before I was diagnosed with Lupus, and NO DOCTOR wants to accept it. I've been told by Medicare there is NO Rheumatologist in the ENTIRE STATE OF TEXAS!!!!!!! THAT IS ABSURD!! I finally was able to get into one in April, and she diagnosed me with RA, Sjorens Syndrome & Reynauds sydnrome as well, got me on meds, but then she turned around and CLOSED HER PRACTICE TO MOVE BACK TO ARGENTINA!!!! Do you believe that? So, at the moment, I call Medicaid every day, get another list of 'their' doctors, sit and call them all only for them to tell me they don't accept the insurance, are a dentist, or only taking in children with Lupus. In other words, I have no doctor treating me for what could be a life threatening disease! I cannot call all these numbers all the time because, quite honestly, it is exhausting and I just feel too sick to fight with it every day. What do you have to do in order to get proper health care? Move like you did? MY husbands business of 30 years is here, house, grandkids, kids, everything is here! Unfortunately we life right smack dab in the middle of texas, so it is an 8 hour drive any way I go to another state, or else I would do that! So, good to meet you, hope to hear from you soon. Judi To: BeingSick Sent: Saturday, June 9, 2012 10:32 AMSubject: Re: Friendship Hi All my name is LMay I have been on this group for a few years but now I have trouble seeing. But I wanted to say hi to all. I live in kansas closer to a better Dr. I am been called back for the second mamo and my parkinsons has flared up along with everything else Hi , I am Judi. I am originally from England, but have lived in Texas. I have Systemic Lupus (white blood cells attacking my own body, Severe pain, Total body fatigue), Reynauds syndrome (changes in skin colour according to stress/heat/cold), Sjorens Syndrome (Cannot tolerate florscent light, sunlight) and Rheumatoid Arthritis (restriction of movement, joint breakdown, pain). I too need friends as I am pretty well isolated these days. Just as a point of interest, ask your doctor to run an ANA test (Auto-immune Nuclear Antibody) Test. Oft times Guillian Barre is a misdiagnosis of Lupus. Judi To: BeingSick Sent: Tuesday, June 5, 2012 2:47 PMSubject: Friendship Hello My name is . I live in Minnesota, USA.I have had Guillian Barre' since 2008. I had a wonderful Dr and Hospital staff. However after three IVIG bags.. they discovered I was algeric to the IVIG. I developed aseptic menengitis (my body attacking me). I would enjoy a new friend.Hope you have a good day,>> Hello everyone,> > i'm a new member and would like to make a friendship. I'm from Middle Esat, educated, have been through difficult times, almost become a solitary woman.> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.