Re: [TMIC] Hello all, about me
Hi, Pamela, and welcome to the group. Sorry about the circumstances, but we are herefor you. I have never heard of "Latent TM". Also can't believe that the doc's can'tcome up with something to strengthen you. I can't imagine working as a nurse and dealingwith TM - you must be stronger than you think. I wish you the best and keep postingin.JaniceQuoting PAMELA S :Hello John; In answer to your question, I was diagnosed in 1992 with pretty good recovery except a straight catheter and extreme fatigue with any viral infection. A few years ago I started getting weaker. In 2000 I had trouble with BIH from the high protein in my spinal fluid. Now all of the sudden I'm weak as a kitten and can hardly get around. The initial hit was between my shoulder blades. My arms weren't effected at first, but they now are. I've continued to work with intermittant leave until last August. This they call Latent TM. I was told in the beginning, once I got well, it would probably stay away. I still have the feeling that there is a fist gripping between my shoulder blades frequently, but the weakness is worse than it's ever been. I'm barely walking, but I am walking. I fall alot. Since 1992 some doctors have learned about tm but many I've used have no idea. I was actually laughed at once for the burning sensation. I said give me a felt marker. I'll mark where it burns, and you will find a dermatone diagram standing in front of you. My biggest issue now is how to adjust to disability. I still have a mortgage over my head. I am a nurse who was working 12 hour shifts on her feet. My only problem was young nurses making fun when a foot dragged or I seemed to be tiring out. Today, I barely make it to 2 in the afternoon before it hurts to hold my head up. PT kills me. The tiniest exercizes and I can't do anything for 2 days without pain. Somehow this doesn't feel latent to me. I need all the advice I can get, especially on disability issues and lifestyle transitions.
Re: [TMIC] Hello all, about me
I dont know if you have applied for disabled social scurity or not but here is a link with some helpful info: http://www.myelitis.org/resources/disabilityapp.htm I went to www.socialsecurity.gov and done the online thing and called them and they gave me a number of a person that I can work with to get this rolling and keep me informed along the way. some people are fortunate enough to get benefits the next month but the normal wait time is 5 months. some have said that it took them over 2 years to get it. you know how it is working with uncle Sam. remember he is our uncle,not our Daddy. did i say that! John from WV --- On Mon, 11/1/10, PAMELA S wrote: From: PAMELA S Subject: [TMIC] Hello all, about me To: "TMC Group" Date: Monday, November 1, 2010, 2:50 PM Hello John; In answer to your question, I was diagnosed in 1992 with pretty good recovery except a straight catheter and extreme fatigue with any viral infection. A few years ago I started getting weaker. In 2000 I had trouble with BIH from the high protein in my spinal fluid. Now all of the sudden I'm weak as a kitten and can hardly get around. The initial hit was between my shoulder blades. My arms weren't effected at first, but they now are. I've continued to work with intermittant leave until last August. This they call Latent TM. I was told in the beginning, once I got well, it would probably stay away. I still have the feeling that there is a fist gripping between my shoulder blades frequently, but the weakness is worse than it's ever been. I'm barely walking, but I am walking. I fall alot. Since 1992 some doctors have learned about tm but many I've used have no idea. I was actually laughed at once for the burning sensation. I said give me a felt marker. I'll mark where it burns, and you will find a dermatone diagram standing in front of you. My biggest issue now is how to adjust to disability. I still have a mortgage over my head. I am a nurse who was working 12 hour shifts on her feet. My only problem was young nurses making fun when a foot dragged or I seemed to be tiring out. Today, I barely make it to 2 in the afternoon before it hurts to hold my head up. PT kills me. The tiniest exercizes and I can't do anything for 2 days without pain. Somehow this doesn't feel latent to me. I need all the advice I can get, especially on disability issues and lifestyle transitions.
Re: [TMIC] Hello all, about me
I hate that part about the mortgage. im in the same boat. the most i can draw from disability is @ 1400. thats before the medicaid insurance is taken out. i understand thats @ 100 per month. i signed that paper for disability but it will be 5b months before i get anything from it. trying to work a little meanwhile. totally understand you not being able to stay on your feet. my boss asks me a lot "John when did you quit drinking?" my answer is always "am i supposed to?" of course we are both joking. others have watched me and asked someone later was I drunk or what? if i get a small accomplishment done i feel like i have really done something. my sis-n-law is a nurse and i have several friends who are nurses and they seam to understand somewhat of what i am going through,they work on a neurological floor at the hospital. My Family Dr told me TM was somethng you see in medical school but never really expect to actually deal with it so it is overlooked. She told me since i seam to have more information on it than she did that if i wanted to do any treatment other than what we were doing to just name it and we would try it. nice of her but being the redneck that i am thought it was rather lame. you should get some good feedback in this list. just be patient and dont read any negative emmotion into anything,,rememberwe are all or most all on some pretty good medication. did i have the microphone turned on when i said that! OMG! welcome John from WV --- On Mon, 11/1/10, PAMELA S wrote: From: PAMELA S Subject: [TMIC] Hello all, about me To: "TMC Group" Date: Monday, November 1, 2010, 2:50 PM Hello John; In answer to your question, I was diagnosed in 1992 with pretty good recovery except a straight catheter and extreme fatigue with any viral infection. A few years ago I started getting weaker. In 2000 I had trouble with BIH from the high protein in my spinal fluid. Now all of the sudden I'm weak as a kitten and can hardly get around. The initial hit was between my shoulder blades. My arms weren't effected at first, but they now are. I've continued to work with intermittant leave until last August. This they call Latent TM. I was told in the beginning, once I got well, it would probably stay away. I still have the feeling that there is a fist gripping between my shoulder blades frequently, but the weakness is worse than it's ever been. I'm barely walking, but I am walking. I fall alot. Since 1992 some doctors have learned about tm but many I've used have no idea. I was actually laughed at once for the burning sensation. I said give me a felt marker. I'll mark where it burns, and you will find a dermatone diagram standing in front of you. My biggest issue now is how to adjust to disability. I still have a mortgage over my head. I am a nurse who was working 12 hour shifts on her feet. My only problem was young nurses making fun when a foot dragged or I seemed to be tiring out. Today, I barely make it to 2 in the afternoon before it hurts to hold my head up. PT kills me. The tiniest exercizes and I can't do anything for 2 days without pain. Somehow this doesn't feel latent to me. I need all the advice I can get, especially on disability issues and lifestyle transitions.
[TMIC] Hello all, about me
Hello John; In answer to your question, I was diagnosed in 1992 with pretty good recovery except a straight catheter and extreme fatigue with any viral infection. A few years ago I started getting weaker. In 2000 I had trouble with BIH from the high protein in my spinal fluid. Now all of the sudden I'm weak as a kitten and can hardly get around. The initial hit was between my shoulder blades. My arms weren't effected at first, but they now are. I've continued to work with intermittant leave until last August. This they call Latent TM. I was told in the beginning, once I got well, it would probably stay away. I still have the feeling that there is a fist gripping between my shoulder blades frequently, but the weakness is worse than it's ever been. I'm barely walking, but I am walking. I fall alot. Since 1992 some doctors have learned about tm but many I've used have no idea. I was actually laughed at once for the burning sensation. I said give me a felt marker. I'll mark where it burns, and you will find a dermatone diagram standing in front of you. My biggest issue now is how to adjust to disability. I still have a mortgage over my head. I am a nurse who was working 12 hour shifts on her feet. My only problem was young nurses making fun when a foot dragged or I seemed to be tiring out. Today, I barely make it to 2 in the afternoon before it hurts to hold my head up. PT kills me. The tiniest exercizes and I can't do anything for 2 days without pain. Somehow this doesn't feel latent to me. I need all the advice I can get, especially on disability issues and lifestyle transitions.
