RE: [TMIC] OT - Happy Safe 4th of July
Well, all; I finally saw the doctors yesterday, the GP and the Neurologist. And I actually had a convulsion fit in front of each doctor--bonus! The neuro says I don't fit the profile of an MS patient because of my age, 62. But he can't rule it out without seeing an MRI. And an MRI is not possible with the Harrington rods in my back. He says it is TM which I have, and not MS. Then, what did I have from January to April that caused all that one-sided stuff and passed the duck test for MS? The duck test is (1) looks like a duck, (2) walks like a duck, (3) quacks like a duck, and (4) tastes like duck. So, I don't fit the normal profile. Well, sorry. So the deal is that the neurologist says he needs fluid from my spine. He is going to try to find a window in all those fusions I have had. Otherwise, he says they take it from the neck. That's not going to happen. I seem to be getting better. The fits don't last as long and are less frequent. My strength is returning; and as long as I take the Lyrica I don't have the pain so much. Since I seem to be getting better I reject any thought of a myelogram from the neck. It is very dangerous. If I were still getting worse, then, of course, it must be given serious consideration. But this is not the case, so the dangers of a neck-level myelogram are not justified. If no myelogram and no MRI are possible then I am where I was when the good doctor in Abu Dhabi declared it Transverse Myelitis in April, many thousands of dollars ago!!! These doctors even left all the medications the same! My dear Chinese wife, that angel who looks after me in body and spirit, says that doctors are responsible for 1/3rd of the healing, and the patient and his or her environment, including spiritual environment, 2/3rds of the healing. In China, a good spiritual environment is considered a necessity for full recovery; which means not just prayer and religious duties, but love, support, forward thinking, seeing the end of things and how all fits into a divine and magical plan wherein we are all better off in the end. Today I will try ice skating again at a nearby rink here in New York. It is hot here, but only 68 degrees in the skating rink, so this is a no-brainer, even if all you do is bring your computer or book and hang out. Dalton Garis In New York: 718-271-2738 -Original Message- From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Wednesday, July 07, 2010 10:55 PM To: CANDIS KALLEY; TMIC-LIST Subject: Re: [TMIC] OT - Happy Safe 4th of July Candis, I really hope the doc's can get to the bottom of what is happening to you. I bet they do and can start treating whatever it is right away. Janice -- From: CANDISKALLEY cakal...@embarqmail.com Sent: Sunday, July 04, 2010 5:30 PM To: TMIC-LIST TMIC-LIST@eskimo.com Subject: Re: [TMIC] OT - Happy Safe 4th of July Dalton, Only gone fishin' about 4 times in my life - no my cup of tea! We are in our rainy season now and its beginning to look like a normal one. The first 2 years with TM we were in a draught and I didn't have too much trouble. Now, its constant pain. Last season, I slept through practically the whole season. How are you doing? Are you in NY now? If I remember right, the last question you asked me was if TM is reoccurring - yes a small percentage will have reoccurring TM. Currently we are trying to figure out why I'm having more spasms which are more severe plus fatigue is MUCH worse. I'm also having both legs/ankles/feet to swell AND I've lost complete control of bladder. I use to have the urge and then a few seconds, up to a minute, before flow. Now is urge and flow all together. With my tottering walk and wearing of diapers, all I'm missing is the energy of a tottler. My MRIs didn't show any difference - no infection just the same spinal scars at C4-T1 and T10-T12. I had a deep vein ultra sound - no blood clots. I go for Spinal Tap and blood work on the 8th. I've done some searching and will talk to doctor about possible thyroid problems which would cause it to function poorly, or several other things. I'm having trouble keeping my vitamine D levels up - if I go below 10,000 IU daily then my blood levels really dip. Are you back in the states for good or just a break? 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: CANDIS KALLEY cakal...@embarqmail.com Sent: Sunday, July 4, 2010 3:30:40 PM GMT -05:00 US/Canada Eastern Subject: RE: [TMIC] OT - Happy Safe 4th of July Thanks, Candy; You goin' fishing?? Mobile: +971-50-668-5760 In New York: 718-271-2738 -Original Message- From: CANDIS KALLEY [mailto:cakal...@embarqmail.com]
Re: [TMIC] I'm back!
Jaron, While you're in Brazil I think you should check out the juices with Acai Berry in them. I have gotten TREMENDOUS relief from drinking this (new to my area) juice called Mona Vie that I've even become a distributor. Its some super antioxidant berry that I am quite sure has anti-inflammatory properties to it. It may not work for everyone but I even have my Dr. hooked on it. And he said he has other patients that drink it and have found relief. Give it a try (at least for a month or 2) and let me know what you think. Have a great day! Jill in Chicago --- On Mon, 7/5/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: [TMIC] I'm back! To: Transverse Myelytis tmic-list@eskimo.com Date: Monday, July 5, 2010, 8:40 AM Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
[TMIC] unsubscribe
I have been trying to unsubscribe for days as I am going on holiday, and will get into trouble if all the messages keep coming through on this work computer. I can not seem to do this.this time and have any trouble in the past! Cheers Sally Wilkinson Business Development Manager Genesis Design The Barn Ipsden Oxfordshire OX10 6AS +44(0)1491 682277 mailto:sally.wilkin...@genesisdesign.uk.com sally.wilkin...@genesisdesign.uk.com
[TMIC] Unidentified subject!
http://tirakoxy.chat.ru
Re: [TMIC] unsubscribe
Sally, go to this website http://www.myelitis.org/tmic/index.html#unsubscribe and it tells you how to unsubscribe. Hope this helps Heather in Calgary - Original Message - From: Sally Wilkinson To: tmic-list-requ...@eskimo.com Cc: tmic-list@eskimo.com Sent: Thursday, July 08, 2010 7:28 AM Subject: [TMIC] unsubscribe I have been trying to unsubscribe for days as I am going on holiday, and will get into trouble if all the messages keep coming through on this work computer. I can not seem to do this.this time and have any trouble in the past! Cheers Sally Wilkinson Business Development Manager Genesis Design The Barn Ipsden Oxfordshire OX10 6AS +44(0)1491 682277 sally.wilkin...@genesisdesign.uk.com
[TMIC] paralysis resources
Hi everyone, I hope that everyone is having a nice summer and not over-baking! I'm working on an article and want to ask all of you what you consider to be your favorite online resources for Spinal Cord Injuries...either in terms of information or support. Seems like it's hard finding quality sites out there and I want to compile a list of the best ones. Thanks for your time. Laura http://practical-homeschooling.org
Re: [TMIC] I'm back! Acai
I've also heard Acai is good stuff, has good properties for weight loss, antioxidants, etc, but not good if you are on anti-coagulation therapy (coumadin or warfarin). Dark berries have high amounts of Vitamin K. I was eating a few too many blueberries lately until my son reminded me about them, darn it, I was really enjoying them. I'm off them for a week or so. Hugs, Barbara A in Auburn CA -Original Message- From: Jill Z jillybean60...@yahoo.com To: Transverse Myelytis tmic-list@eskimo.com; j ra rumc...@hotmail.com Sent: Thu, Jul 8, 2010 6:09 am Subject: Re: [TMIC] I'm back! Jaron, While you're in Brazil I think you should check out the juices with Acai Berry in them. I have gotten TREMENDOUS relief from drinking this (new to my area) juice called Mona Vie that I've even become a distributor. Its some super antioxidant berry that I am quite sure has anti-inflammatory properties to it. It may not work for everyone but I even have my Dr. hooked on it. And he said he has other patients that drink it and have found relief. Give it a try (at least for a month or 2) and let me know what you think. Have a great day! Jill in Chicago --- On Mon, 7/5/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: [TMIC] I'm back! To: Transverse Myelytis tmic-list@eskimo.com Date: Monday, July 5, 2010, 8:40 AM Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
[TMIC] Re: [TMIC] I'm back! Açaí
Well, I drank some açaí as well, then switched to pills, and noticed no difference. Maybe I'll try a higher dose. BobbyJim From: Barbara Alma To: jillybean60...@yahoo.com ; tmic-list@eskimo.com Sent: Thursday, July 08, 2010 14:43 Subject: Re: [TMIC] I'm back! Acai I've also heard Acai is good stuff, has good properties for weight loss, antioxidants, etc, but not good if you are on anti-coagulation therapy (coumadin or warfarin). Dark berries have high amounts of Vitamin K. I was eating a few too many blueberries lately until my son reminded me about them, darn it, I was really enjoying them. I'm off them for a week or so. Hugs, Barbara A in Auburn CA -Original Message- From: Jill Z jillybean60...@yahoo.com To: Transverse Myelytis tmic-list@eskimo.com; j ra rumc...@hotmail.com Sent: Thu, Jul 8, 2010 6:09 am Subject: Re: [TMIC] I'm back! Jaron, While you're in Brazil I think you should check out the juices with Acai Berry in them. I have gotten TREMENDOUS relief from drinking this (new to my area) juice called Mona Vie that I've even become a distributor. Its some super antioxidant berry that I am quite sure has anti-inflammatory properties to it. It may not work for everyone but I even have my Dr. hooked on it. And he said he has other patients that drink it and have found relief. Give it a try (at least for a month or 2) and let me know what you think. Have a great day! Jill in Chicago --- On Mon, 7/5/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: [TMIC] I'm back! To: Transverse Myelytis tmic-list@eskimo.com Date: Monday, July 5, 2010, 8:40 AM Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron -- Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
