[TMIC] Fw: Automimmune disorders
- Original Message - From: Gary Thomas To: Transverse Myelitis list Sent: Wednesday, May 09, 2012 10:29 AM Subject: Automimmune disorders This was in today's South Bend (Indiana) Tribune. It deals with hard to diagnose autoimmune disorders. Gary (Niles, MI) http://www.southbendtribune.com/features/ourlives/sbt-20120509sbtmichb-08-03-20120509,0,5304526.story
[TMIC] (no subject)
RE: [TMIC] Fw: Automimmune disorders
My family knows a lot about genetically passed auto-immune issues. My mother, sister and I have all manifested several auto-immune diseases. my mother has had rheumatoid arthritis for many years and has bouts of both temporal arteritis (inflammation and damage to blood vessels supplying the head area) and alopecia (near-total hair loss). Lucky for her, with the help of Rogaine for women, her hair has returned to near-original condition. My sister had a minor bout of shingles several years ago (only affected her left arm, but still extremely painful) and spent many years of pain and discomfort and went thru many doctors before finally being diagnosed with Celiac (gluten intolerance). Her system is so sensitive, she and her husband even have to use separate cutting boards so as not to cross-contaminate their food. And I, of course, was stricken with TM six years ago. Though not sure if it is also an auto-immune disease or not, I also have scoliosis, for which I had spinal surgery at 19 to fuse 9 vertebrae and spent 11 months in body casts. My family has had enough of being special! Betty Clark (in Northern California) _ From: Roger Terese Pratt [mailto:r.c.pr...@frontier.com] Sent: Wednesday, May 09, 2012 8:16 AM To: Gary Thomas Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Fw: Automimmune disorders Thanks, Gary. Most people have not even heard of autoimmune disorders. - Roger in Kennewick, WA - Original Message - From: Gary Thomas gbthomas8...@sbcglobal.net To: tmic-list@eskimo.com Sent: Wednesday, May 9, 2012 7:36:08 AM Subject: [TMIC] Fw: Automimmune disorders - Original Message - From: Gary Thomas mailto:gbthomas8...@sbcglobal.net To: Transverse mailto:l...@eskimo.com Myelitis list Sent: Wednesday, May 09, 2012 10:29 AM Subject: Automimmune disorders This was in today's South Bend (Indiana) Tribune. It deals with hard to diagnose autoimmune disorders. Gary (Niles, MI) http://www.southbendtribune.com/features/ourlives/sbt-20120509sbtmichb-08-03 -20120509,0,5304526.story
RE: [TMIC] cancer vs tm
Interesting so many of you have sleep problems. I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things - I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must hunt-and peck two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can't hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there - I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I'm doing - such as answering my emails, playing games on the computer, or researching my genealogy - that I forget about the pain for a bit. Sleep helps to restore the body - I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. Betty (in Northern California) _ From: Linda Cherpeski [mailto:cherp...@msn.com] Sent: Wednesday, May 09, 2012 6:51 AM To: rn11974; TM List Subject: RE: [TMIC] cancer vs tm Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda _ Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car.But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim On Wed, May 9, 2012 at 10:41 AM, Elizabeth Clark xbeecla...@gmail.comwrote: ** Interesting so many of you have sleep problems… I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. ** ** The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. *** * ** ** It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. ** ** Pain can age a body way beyond its years in no time. TM has already robbed me of many things – I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must “hunt-and peck” two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can’t hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there – I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I’m doing – such as answering my emails, playing games on the computer, or researching my genealogy – that I “forget” about the pain for a bit. ** ** Sleep helps to restore the body – I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. ** ** Betty (in **Northern California**) ** ** -- *From:* Linda Cherpeski [mailto:cherp...@msn.com] *Sent:* Wednesday, May 09, 2012 6:51 AM *To:* rn11974; TM List *Subject:* RE: [TMIC] cancer vs tm ** ** Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda -- Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or
[TMIC] Hands or legs
I have had TM for 8 years. I have slowly lost about 1/2 of my hand function it is not fun. The numbness in my hands seems to be increasing every year I developed essential tremors in my right hand 2 years into the disease (I am right handed). My hobbies had always been sewing, scrapbooking, any kind of crafts. I can only manage about 1/2 hour of using my hands before the numbness goes up into my arms then they just string burn. I would vote for having full use of my hands over walking any day. Linda in East Texas From: James Berg molokai...@gmail.com To: Elizabeth Clark xbeecla...@gmail.com Cc: TM List tmic-list@eskimo.com Sent: Wednesday, May 9, 2012 5:25 PM Subject: Re: [TMIC] cancer vs tm Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car.But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim
Re: [TMIC] cancer vs tm
Betty, I agree with you 100%.That is why I have been pushing the use of pain management doctors.They know what they are doing and understand pain. They have helped me quite a bit. Janice From: Elizabeth Clark Sent: Wednesday, May 09, 2012 3:41 PM To: 'TM List' Subject: RE: [TMIC] cancer vs tm Interesting so many of you have sleep problems… I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things – I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must “hunt-and peck” two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can’t hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there – I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I’m doing – such as answering my emails, playing games on the computer, or researching my genealogy – that I “forget” about the pain for a bit. Sleep helps to restore the body – I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. Betty (in Northern California) From: Linda Cherpeski [mailto:cherp...@msn.com] Sent: Wednesday, May 09, 2012 6:51 AM To: rn11974; TM List Subject: RE: [TMIC] cancer vs tm Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] Fw: Automimmune disorders
Yup, I would agree you and your family have had enough of autoimmune diseases. Your pain will be rewarded. Janice From: Elizabeth Clark Sent: Wednesday, May 09, 2012 2:58 PM To: 'Roger Terese Pratt' ; 'Gary Thomas' Cc: tmic-list@eskimo.com Subject: RE: [TMIC] Fw: Automimmune disorders My family knows a lot about genetically passed auto-immune issues. My mother, sister and I have all manifested several auto-immune diseases… my mother has had rheumatoid arthritis for many years and has bouts of both temporal arteritis (inflammation and damage to blood vessels supplying the head area) and alopecia (near-total hair loss). Lucky for her, with the help of Rogaine for women, her hair has returned to near-original condition. My sister had a minor bout of shingles several years ago (only affected her left arm, but still extremely painful) and spent many years of pain and discomfort and went thru many doctors before finally being diagnosed with Celiac (gluten intolerance). Her system is so sensitive, she and her husband even have to use separate cutting boards so as not to cross-contaminate their food. And I, of course, was stricken with TM six years ago. Though not sure if it is also an auto-immune disease or not, I also have scoliosis, for which I had spinal surgery at 19 to fuse 9 vertebrae and spent 11 months in body casts. My family has had enough of being “special”! Betty Clark (in Northern California) From: Roger Terese Pratt [mailto:r.c.pr...@frontier.com] Sent: Wednesday, May 09, 2012 8:16 AM To: Gary Thomas Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Fw: Automimmune disorders Thanks, Gary. Most people have not even heard of autoimmune disorders. - Roger in Kennewick, WA - Original Message - From: Gary Thomas gbthomas8...@sbcglobal.net To: tmic-list@eskimo.com Sent: Wednesday, May 9, 2012 7:36:08 AM Subject: [TMIC] Fw: Automimmune disorders - Original Message - From: Gary Thomas To: Transverse Myelitis list Sent: Wednesday, May 09, 2012 10:29 AM Subject: Automimmune disorders This was in today's South Bend (Indiana) Tribune. It deals with hard to diagnose autoimmune disorders. Gary (Niles, MI) http://www.southbendtribune.com/features/ourlives/sbt-20120509sbtmichb-08-03-20120509,0,5304526.story
[TMIC] the pain
Cheryl, Thanks as always for sharing. I can't play the game of choosing poisons, it hurts too much. I am grateful to be able to create, I grieve daily on my inability to create in the way I once did. I need to stand to lift 30 pound ladles of hot glass, to cast large sheets of paper. I need to walk up or down stars to get to my looms and my kilns, my beaters and my grinders. The inability to walk in a tiny town means I can't get anywhere to present, perform, teach, learn, explore, see. During March as a part of National Crochet Month I participated in an online group's daily freeform challenge. I made something new every day, sometimes multiple time a day and the result of this was a ton of work -- a triptych, a new alphabet design, and lots of new skills, ideas and pieces. I couldn't go to the store to buy fabric to mount the triptych, took my chances buying the material online and after sewing the pieces which turned into 3' wide panels -- i need dowels to hang the panel. while dowels are also online -- I can't afford to pay the exorbitant shipping -- 20 and up for what is $5 worth of wood -- and to get someone to go get it for me is $20/hour plus costs of materials with the uncertainty about getting what i want -- and there's no way for me to get to the hardware store, less than a mile away. So I can't finish my art, and unfinished, it can't be sent, submitted or delivered. And it's all the fault of T.M. I undertook a correspondence course to certify me to teach crochet, got the certification, lined up three jobs ( amazing, even in this economy), created curriculum and then spent six months trying to find a way to get to the sites. Even with a disabled jobs firm (via social security) working on my case, where the worker visits mainly to hang out because there's nothing they can do for me. EVeryone else they help, be they blind or mentally challenged - can walk, can get to where they need to go. So I envy the stories of those who found new things to do or new ways to do things. I am smacked at every turn. All praises for the internet so i can get glimpses of shows and art, and have discourse and discussion. The lessons of T.M. have been horrible -- did I need to know who wouldn't be there for me? Is there some after that this sad knowledge will be useful in? Maybe I'm slow, but I don't get it. Was it about asking for help and not getting any? I long for the overarching insight others report having gained from their situations, mine has been isolating and diminishing and I'm just hurt and bewildered. I ignore the pain until I can't or sometimes --- when I don't get much done for days and wonder why, then I remind myself that I'm pushing through a fog of pain, and sliding half of an unresponsive self in and out of bed. The worst question I get is does it hurt or how does it feel like, because then i focus on it and realize that i had dialed it down to a dull hum. or low static, and focusing on it, sharpens it. I play the game of --if just one leg could move, then i could get in and out of cars, and if i could just stand -- not even walk, just stand, then i could travel-- because then i could use bathrooms other than the one at home with the special seat for me to transfer on to. And I play the game of if i had a million dollars -- i play that one a lot-- if i had a million dollars then i could get the exoskeleton -- there was a news item on TV about a woman who ran a marathon in her exoskeleton -- then i could walk downtown, walk to the store… ….. Glad you found a solution. My one pill solution for pain is naltrexone and other than that -- sleep. that all be well, Akua
RE: [TMIC] cancer vs tm
Hi Jim, I'm Betty Elizabeth - it's not that I have arthritis-like pain in my hands. after TM struck me (at C7), in addition to leaving me with a weak left leg and drop foot, no temperature sensation from the chest down and banding of the torso, it also affected the tendons in my arms. I've had two surgeries on my right arm/wrist (my dominant side, of course) to re-route lesser tendons to do the job of the damaged main ones. This took two years and many arm, hand and finger splints as well as much occupational therapy. After TM struck (at C7), all four fingers on my right hand dropped at the knuckle. With my palm facing down, I couldn't lift them up on my own. Since the surgeries, I can now lift them, however, I can't bend the fingers completely around at the last finger joint - especially the middle finger! Essentially, I can't make a complete fist with that hand. I can't even wrap my fingers completely around the steering wheel when I drive. I kind of grip it between my palm and thumb. As for my left hand, it has a claw-like appearance, with the index finger constantly pulling down. I can, luckily, make a fist with that hand. The overall look, however, is that I'm always giving folks the bird - with both hands!! Because of this, I can't place my fingers on a keyboard and strike each key with the correct fingertip. I don't have the motor control for that action. It likewise makes it somewhat difficult to grip a knife to cut food or even handle a fork or spoon properly. Fortunately my family and friends forgive my awkward movements when attempting to feed myself in public. While I really miss being able to do certain things with my hands, I'm grateful for the function I do have. Considering the alternative. I figure I'm doing good as long as I'm on the up-side of the grass! _ From: James Berg [mailto:molokai...@gmail.com] Sent: Wednesday, May 09, 2012 3:26 PM To: Elizabeth Clark Cc: TM List Subject: Re: [TMIC] cancer vs tm Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car. But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim On Wed, May 9, 2012 at 10:41 AM, Elizabeth Clark xbeecla...@gmail.com wrote: Interesting so many of you have sleep problems. I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things - I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must hunt-and peck two-fingered on the keyboard, when my fingers used to fly
