[TMIC] Thanks
I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last week. I justed wanted to elaborate more on myself since people have asked. Hope this was not to long, but I am having to learn how to be more expressive with my feelings to cope with my problems. I am so glad I found this list and feel blessed that I am now a part of it. I would just like to ask every one to keep me in your prayers as I start this difficult journey to recovery. Thanks again for all of your support. Thank you so much. Ruben Towery Mount Olive, AL (Birmingham, AL) Sent from my iPod
Re: [TMIC] Omega 3 and muscle convulsions
My brother just informed me that there is a link between fish oil and nerve inflammations. I have a bad back even before TM mow it is a neon sign inviting any biologically active agent inside. I was without the fish oil for about 5 days because I had run out. No spells for 8 days. I got back on the omega 3which I take for depressionand within a couple of days I got a convulsive spell lasting for 6 hours, the worst one yet. Then I awoke this morning and spent another two hours being alternatively as stiff as an oak plank to collapsing in a chair. Has anyone else heard of their being some kind of link between using high dosed of fish oil and exacerbating inflamations? Dalton Garis Abu Dhabi/New York On 4/6/10 5:28 PM, Towery, Ruben Dale rdtow...@southernco.com wrote: I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last week. I justed wanted to elaborate more on myself since people have asked. Hope this was not to long, but I am having to learn how to be more expressive with my feelings to cope with my problems. I am so glad I found this list and feel blessed that I am now a part of it. I would just like to ask every one to keep me in your prayers as I start this difficult journey to recovery. Thanks again for all of your support. Thank you so much. Ruben Towery Mount Olive, AL (Birmingham, AL) Sent
Re: [TMIC] Omega 3 and muscle convulsions
Dalton, I take 6000 units/day and haven't had any experience like what you're describing. Has your doctor confirmed this as a side effect of Omega 3? Sorry about your pain..hope you get some relief soon. I suppose I mean acute pain, as pain is part of this game...since the numbness went away, pain is with me every day. Keep on fighting janh Stillwater OK From: Dalton Garis malugss...@gmail.com To: Towery, Ruben Dale rdtow...@southernco.com; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 9:03:11 AM Subject: Re: [TMIC] Omega 3 and muscle convulsions My brother just informed me that there is a link between fish oil and nerve inflammations. I have a bad back even before TM mow it is a neon sign inviting any biologically active agent inside. I was without the fish oil for about 5 days because I had run out. No spells for 8 days. I got back on the omega 3—which I take for depression—and within a couple of days I got a convulsive spell lasting for 6 hours, the worst one yet. Then I awoke this morning and spent another two hours being alternatively as stiff as an oak plank to collapsing in a chair. Has anyone else heard of their being some kind of link between using high dosed of fish oil and exacerbating inflamations? Dalton Garis Abu Dhabi/New York
Re: [TMIC] Thanks
WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last
Re: [TMIC] Omega 3 and muscle convulsions
Dalton, May I ask why fish oil? Is it due to vit. D or something else? I had a blood test for vit. D and had about 1/3 of recommended levels. The pain levels decease some as the levels of vit. D increase. However, I have to take 20,000 IU daily of vit. D this is in addition to the vit. D in my women's daily vit. and the products and foods I consume that have vit. D naturally and infused. At this level of consumption, I keep the vit. D level at the low end of the recommended scale. TM is an autoimmune disease and vit. D is very important to the immune system. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Dalton Garis malugss...@gmail.com To: Ruben Dale Towery rdtow...@southernco.com, tmic-list@eskimo.com Sent: Friday, June 4, 2010 10:03:11 AM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] Omega 3 and muscle convulsions My brother just informed me that there is a link between fish oil and nerve inflammations. I have a bad back even before TM mow it is a neon sign inviting any biologically active agent inside. I was without the fish oil for about 5 days because I had run out. No spells for 8 days. I got back on the omega 3—which I take for depression—and within a couple of days I got a convulsive spell lasting for 6 hours, the worst one yet. Then I awoke this morning and spent another two hours being alternatively as stiff as an oak plank to collapsing in a chair. Has anyone else heard of their being some kind of link between using high dosed of fish oil and exacerbating inflamations? Dalton Garis Abu Dhabi/New York On 4/6/10 5:28 PM, Towery, Ruben Dale rdtow...@southernco.com wrote: I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major
Re: [TMIC] new member
Fatigue is a symptom, as is pain. Ask about your levels of D, B12, whether you need folic acid, whether you are anemic. You can attend to these by diet and supplements. When i was ambulatory and thought i was recovering I embarked on a course of acupuncture which helped enormously to relieve the electric shock pains and increased my feeling of general well being. I didn't like steroids either and now harbor the suspicion that they set me up for the unresolved infection to take hold and paralyze me as my first bout was October 4, from which i recovered and my second was November 14 at 3:04 am, which has left me paralyzed. I sadly did not receive enough physical therapy-- I would urge you and anyone to get as much as they can if you have some knowledgeable experts. I've had folks who knew what i needed and what to do for me and have had others that seem to work by rote... Wishing you the best, healing and relief, Akua --
Re: [TMIC] OT bed question
Thanks for sharing that Jim--- for once a reasonable price! I have a hospital bed with this mattress pad overlay. http://www.parentgiving.com/shop/silicore-bed-pad/shop-parent-giving-1425.html SILICORE® Bed Pad cushions and protects all pressure-prone areas of the body. SPENCO® SILICORE® Fibers, unique siliconized hollow core shafts that wont mat down, retain their loft and air flow. Washable and dryable. Reversible with moisture-resistant nylon on the other side. Made in USA. 78 x 36. --
Re: [TMIC] Thanks
Hindsight is 20-20 My first numbness was Sept 11 I went to a chiropractor for several weeks When i began to be constipated I went to the doctor... as this progressed I had increasing back pain. I had cartoon legs on Oct.4 and drove myself from work to the emergency room spent a long weekend in the hospital but drove myself home to take oral steroids used a cane then got rid of the cane and then it struck again on 11/14 this was in 2005. I wish i had had the blood replacement therapy in October and perhaps i would have avoided becoming paralyzed in November read as much as you can and ask your Drs about options for treatment as the earlier the intervention, the better the outcome --
[TMIC] Re: new member
Hi Kelly Jean, Welcome to our world at TMIC. I can only answer a few of your questions. I've had TM for 9 years now but have not done acupuncture, reflexology or homeopathic meds. I had the solumedrol when I first got TM but don't remember as I was in a coma at my onset but I have not had any steroids since my release. If you look in the TMIC archives you will find a lot of answers there as well. My lesion is T-6 to T-10 and I am a paraplegic and yes, therapy and stretching does help. For me the tight banding has not eased at all nor has the stingy/buzzing feeling. I know what you meant when you talked about the water splashing on you, horrible but the meds my neurologist has me on is Neurontin, Ultram and Zanaflex. I am not thinking too clearly at the moment (sorry) but wanted to welcome you to our family, you are not alone.Ella
Re: [TMIC] Thanks
Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back
Re: [TMIC] Thanks
Rueben, I don't know how to explain 'going forward'..I was struck down 14+ years ago at 57 years of age. I was paralyzed from t8...so I had to learn to walk again. I think the key to my recovery was no one told me I wouldn't get better. When he released me from the hospital/skilled nursing, my nuero only told me one thing wouldn't return. That was my temperature control, I sweat only from shoulders up, and he was correct. Except in '04 I got a fever of unknown origin and with a week in local hospital, and a week in OKC hos- pital, I continue to have chills/sweats at strange timesnothing like it was, but another quirk in my health. Like tm, I'd never heard of a fever of unknown originguess that makes me unique, or strange or that my immune system works overtime fighting it self. Enough of me..for now, don't expect too much of yourself 'cause that'll make failure appear possible. Just take things slow...do something that you can share with your kids.they'll love to be a part of your getting better. I'm thinking positive thoughts for you. janh From: Towery, Ruben Dale rdtow...@southernco.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 5:40:25 PM Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet.
Re: [TMIC] happy birthday June
Happy birthday to all born this month and we have a somber anniversary on the 6th, the one year passing of Pam Montz so I ask that you please say a prayer for her family...Ella
Re: [TMIC] Thanks
i'm stuck and fortunately-- though i didnt think so at the time i was stuck away from home in another city but this other city had on demand paratransit and my life felt nearly normal. the paratransit was available 20 hours a day 7 days a week so i could work, teach, go to shows, plays, movies-- and i did-- and also did all my shopping for myself only at home at last did i become crippled because i can go nowhere, and get nothing not even can i be assured of a ride to medical appointments and i had to give up physical therapy because the agency that subsidized the occasional ride rationed services to 3 trips max per month to doctor only, between the hours of 10 and 2, if you're lucky so i've been working on creating a paratransit nonprofit after a year of begging, explaining and letter writing. my municipality SUCKS big time-- they're contemplating getting rid of seven firefighters and the firemen are the best first responders here-- faster than the ambulance/911 and way better than police. sorry for the rant but back to what you asked. call around. if your community is more enlightened than mine, you have either public or private paratransit-- folks to help you get from a to b hook up with physical therapy asap. if you live in an enlightened place there may be transport to the therapy ( as there was in Rochester) There are LOTS of paratransit/lift equipped vehicles in my area, ARC, pathways, school buses, the thing is you, like i, as a former able bodied person who was not in the system, don't fit any of the target populations for help BUT your community may be smarter and kinder than mine and SO these organizations with vehicles may extend their support to you--- or maybe even your public transport has a service as all the counties surrounding mine do so make lists, call, and write AND just in case you live in as unrigorous a place as I do, call every place at least twice if you don't get the answer you want, because the next day the answer may change ( i have a story about filling out a form for transport sending it to the bus company-- a 3 month process only to find out the day before my drs appointment that the pick up service did not serve my city. then spent another 6 months fighting to get the bus company who gets federal funds to do route deviation, to do route deviation and assist me over the grassy media on to the bus i can't use them because after twice making reservations and taking the bus didn't have tie-down equipment-- two life risking rides is two too many but again, your municipality may be more rigrous, enlightened and suppportive of its physically challenged citizens) Akua --
Re: [TMIC] new member
Kelly Jean, I have had TM since January of 2007. I just turned 60 the month before. I was paralyzed from the shoulder blades on down, but with proper meds, much physical therapy, and no one telling me that I would never do whatever again, I can walk on my own, sometimes with my cane.The banding is not that much of a bother now either. I was lucky to be living in a medical center with excellent doctors. By the 3rd day, they knew it was TM and had me on steroids immediately and for quite a while.It seems to have taken quite a while to get your diagnosis and start on the proper meds, but don't give up. My husband never told me the doctors didn't think I would ever walk again - it would have ruined my fighting spirit. If you feel you are not being treated properly, there are those that have gone to specialized places that have done research on the treatment of TM's damage to the body. Please keep emailing in to us. There is a lot of information that I know will be forthcoming from the other TM'ers. Just keep in touch with us and good luck. If nothing else, we are able to help take some of the isolation feeling that we all seem to get from this disease being so rare. Janice, Missouri From: Kelly Jean Craig Sent: Thursday, June 03, 2010 11:58 AM To: tmic-list@eskimo.com Subject: [TMIC] new member Hi Everyone, Well, I was reluctantly admitted to the TM group last week. My name is Kelly Jean and I am 28 years old. I am a cancer research scientist, athlete, wife and pug lover. I was diagnosed after a strange string of events. I woke up two weeks ago with a coughing episode that left me feeling like there was a constrictive band around my chest. I thought I was having a heart attack. The ER visit left me feeling better after they gave me a Toradol injection in the left cheek . However, the next morning my toes felt numb and tingly on the injection side. As the day went on I noticed, the numbness and sensitivity was growing. By the next day, I couldn't stand to touch myself on the left leg. The worst pins/needles sensation you could imagine. Myy husband, splashed water on my leg near the garden and I fell down in pain. It was like someone poured liquid nitrogen down my body. I received my PhD studying a movement disorder (Parkinson disease), so I thought this could be peripheral neuropathy. I just knew that the nurse who gave my that Toradol injection damaged by nerves and I was having sensory neuron damage...little did I know. After 5 doctor visits and everyone saying these sensations would pass, I finally convinced another ER doc to give me an MRI. Almost 10 days later, they found a T3 lesion on my spinal column and 2 small lesions in my brain. They admitted me to the hospital and began my solumedrol treatments 1000mg/day x 5 days. The solumedrol nearly incapacitated me. I couldn't walk, lift my head, speak or chew. I was release from the hospital and I am just now on day 2 of my oral taper prednisone doses. I still feel like I am in a fog. My abdomen feels like a tons of bricks. After nearly two weeks of bed rest, I am feeling crippled physically and emotionally. My head aches just after sitting up for a few minutes. Does anyone else have this sort of reaction to the steroids? They did a lumbar puncture and we are awaiting the CSF lab results to rule out MS. Perhaps, the puncture hasn't fully healed yet. The doctors are guessing this was an infectious case of TM. I am praying that this is a monophasic event and this suffering will soon be over. Does anyone have any suggestions? Massage therapy? Physical therapy? Acupuncture? Reflexology? Homeopathic meds? I am desperate to be better. Any and all advice is welcomed. Sorry if this email seems to dance all over the place. Typing and reading this email has tuckered me out today. Thanks for your support, Kelly Jean --- On Mon, 5/31/10, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: Re: [TMIC] Shoes To: Cody c...@austin.rr.com, tmic-list@eskimo.com Date: Monday, May 31, 2010, 7:48 PM I wear hose and crocks and remind myself to turn my feet -- was getting a pressure sore on the side of my left foot from it laying on the side of foot rest went back to strapping feet in boots at night for a few nights I am having a terrible time with pressures sores on my feet. I am interested in hearing what kind of shoes those of you who have to use wheelchairs are wearing. My problem is my left foot turns inward and lays on my footrest on its left side. And that's where the pressure sore is located on the ball of my foot just behind my little toe. My wife just bought me a pair of ankle high boots which hopefully will tend to keep my foot straight with the ankle support. I have been wearing regular tennis shoes. I
Re: [TMIC] Thanks
We are just glad you joined us and want to hear from you whenever possible. Also, feel free to jump in at any time to give your advice or opinion of anything. Janice, Missouri -- From: Towery, Ruben Dale rdtow...@southernco.com Sent: Friday, June 04, 2010 8:28 AM To: tmic-list@eskimo.com Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last week. I justed wanted to elaborate more on myself since people have asked. Hope this was not to long, but I am having to learn how to be more expressive with my feelings to cope with my problems. I am so glad I found this list and feel blessed that I am now a part of it. I would just like to ask every one to keep me in your prayers as I start this difficult journey to recovery. Thanks again for all of your support. Thank you so much. Ruben Towery Mount Olive, AL (Birmingham, AL) Sent from my iPod
Re: [TMIC] Thanks
Great reply, Jan.I hope both Ruben and Kelly Jean read this and take it to heart. Janice From: Jan Hargrove Sent: Friday, June 04, 2010 11:04 AM To: Towery, Ruben Dale ; tmic-list@eskimo.com Subject: Re: [TMIC] Thanks WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started
[TMIC] EFT
Has anyone used or tried EFT? --
Re: [TMIC] Thanks
Ruben, That is part of the isolated feeling - not being able to get out like we used to, and having so rare a disease that no one can understand what you are going through. When the doctors get your pain/numbness/discomfort under control, your life will open up more. Just keep bugging them to help you control these problems as much as possible. They don't know unless you tell them. I have found that I have improved, even past the 2-year mark.It takes a lot of physical therapy and it doesn't hurt to be on a medication for depression. I wasn't depressed in the sense that I would not respond to anyone, I just needed a boost to accept what has happened and help me to WANT to keep working to improve the situation if at all possible. Things do get better, but it takes time. Be patient and work hard - you can do this. There are a lot more of the TM'ers that are worse off than you seem to be and they have improved even past the 7th year. Good luck and keep emailing in to us. We want to hear from you whether questions or comments or advice. Janice, Missouri -- From: Towery, Ruben Dale rdtow...@southernco.com Sent: Friday, June 04, 2010 5:40 PM To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of
RE: [TMIC] EFT
Yes, I have used / tried EFT. It is a very interesting concept. I believe it works, Janet -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: June 4, 2010 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] EFT Has anyone used or tried EFT? --
Re: [TMIC] Thanks
Jan, I have the lack of temperature control too. I hate it so much It makes me feel weak and miserable. Do you have anything that you take to try to help the situation? Janice From: Jan Hargrove Sent: Friday, June 04, 2010 6:08 PM To: Towery, Ruben Dale Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Thanks Rueben, I don't know how to explain 'going forward'..I was struck down 14+ years ago at 57 years of age. I was paralyzed from t8...so I had to learn to walk again. I think the key to my recovery was no one told me I wouldn't get better. When he released me from the hospital/skilled nursing, my nuero only told me one thing wouldn't return. That was my temperature control, I sweat only from shoulders up, and he was correct. Except in '04 I got a fever of unknown origin and with a week in local hospital, and a week in OKC hos- pital, I continue to have chills/sweats at strange timesnothing like it was, but another quirk in my health. Like tm, I'd never heard of a fever of unknown originguess that makes me unique, or strange or that my immune system works overtime fighting it self. Enough of me..for now, don't expect too much of yourself 'cause that'll make failure appear possible. Just take things slow...do something that you can share with your kids.they'll love to be a part of your getting better. I'm thinking positive thoughts for you. janh From: Towery, Ruben Dale rdtow...@southernco.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 5:40:25 PM Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep
Re: [TMIC] new member
Kelly, I've had TM since Jan. 5, 2006. Here's some websites that might help with TM and related. Help for meds can usually be done with/through the manufactures patient assistance departments. For general info with help try these website http://www.disabilityhelpsite.com/ http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.4048063/k.BDDB/Home.htm For Depression and help with nerve pain, I take Cymbalta. Try these websites: http://www.cymbalta.com/index.jsp Lilly is good about help with meds so try - http://www.lilly.com/responsibility/servingpatients/programs/ Another website for help with meds - http://www.pparx.org/ Some other meds are: Tizanidine (Zanaflex) for muscle spasms; Hydroco/APAP 7.5-500 Tab for break-thru pain; Tramadol HCL 50mg for pain, it is a narcotic; Gabapentin is a genetic for Lyrica - Try http://www.lyrica.com/index.aspx?source=yahooHBX_PK=s_lyricaHBX_OU=51o=44962814|221361396|0 and Voltaren Gel for pain in shoulder, arms, elbows, hands and legs. I also use an Electric Muscle Stimulator (EMS) for pain especially in my lower back and left neck/shoulder. I did use a TENS which is constant muscle stimulation but I've found that they EMS is better because I can program off/on periods of muscle stimulation. The muscles/nerves seem to like several seconds between the electrical pulsing. The EMS also delivers the stimul I've found that heat helps so I have multiple heating devices - heating pads, seat back covers with massage heat (Homedic), back braces with removable gel pads that can be heated in the micro wave or chilled in refrig/freezer (which I never do because cold is torture to me). I also have back packs that are heated in the micro wave (I believe they are called Bed Buddy). For good info on TM try: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/transverse_myelitis/conditions/ http://www.mayoclinic.com/health/transverse-myelitis/DS00854 http://www.answers.com/topic/transverse-myelitis http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm For info on SSD and SSDI help and info: http://www.disabilitysecrets.com/ http://www.disabilityclaimssolutions.com/newsletters.html http://groups.yahoo.com/group/Disinissues/ http://en.wikipedia.org/wiki/Employee_Retirement_Income_Security_Act http://www.ddbchicago.com/Quick%20links/federal-disability-laws.html http://www.lectlaw.com/tgvb.htm http://erisa.petti-legal.com/ http://www.lectlaw.com/files/gvb07.htm http://www.govbenefits.gov/ TM is a cousin of MS so much of the info regarding MS will apply to TM http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36 I'm not sure if you were working or if so, if you had LTD through your employer. If you do, be prepared to fight them. Most employer based LTD insurance companies will try to quit paying after 2 years. I recommend that you join http://groups.yahoo.com/group/Disinissues/ This website has many great links and recommendations for fight the LTD companies. I hope some of the info I've covered will help you. To help explain to your family and friends how TM affects you, read and explain by the Spoon Theory - http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Janice Nichols jan...@centurytel.net To: Kelly Jean Craig n2resea...@yahoo.com, tmic-list@eskimo.com Sent: Friday, June 4, 2010 11:57:45 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] new member Kelly Jean, I have had TM since January of 2007. I just turned 60 the month before. I was paralyzed from the shoulder blades on down, but with proper meds, much physical therapy, and no one telling me that I would never do whatever again, I can walk on my own, sometimes with my cane. The banding is not that much of a bother now either. I was lucky to be living in a medical center with excellent doctors. By the 3rd day, they knew it was TM and had me on steroids immediately and for quite a while. It seems to have taken quite a while to get your diagnosis and start on the proper meds, but don't give up. My husband never told me the doctors didn't think I would ever walk again - it would have ruined my fighting spirit. If you feel you are not being treated properly, there are those that have gone to specialized places that have done research on the treatment of TM's damage to the body. Please keep emailing in to us. There is a lot of information that I
