I am also very concerned about you Dalton as I read through your posts. Is there a possibility that your doctor would consider consulting with Dr. Greenberg at UT Southwestern Med Center, Dallas, Texas? I went to the Symposium Sept 24-26, 2010 held in Dallas. Our very kind and generous Jim Lubin has placed the Symposium videos on the TMA site. Have you had a chance to watch any of them? I'm just trying to find a way here to get you some much needed help. Maybe the 2 doctors could brainstorm by email/phone or whatever, and possibly agree to try another approach that would work better for you. I'm not even sure if I've explained that very well, but it certainly could not hurt if your doctor would be willing to consult with one of our specialists here in the states. There are many of our TM friends who are doing this now or have done it in the past. Your TM symptoms/residuals/relapses - not sure what to call them - are unique. You need additional help and I'm sure your doctor is frustrated. I hope at least some of this makes sense. I wish you the very best Dalton, Linda ----- Original Message ----- From: Dalton Garis<mailto:[email protected]> To: [email protected]<mailto:[email protected]> ; Gary Thomas<mailto:[email protected]> ; Janice Nichols<mailto:[email protected]> ; [email protected]<mailto:[email protected]> ; TMIC<mailto:[email protected]> Sent: Wednesday, March 09, 2011 11:19 AM Subject: Re: [TMIC] Connected?
Also, The MRIs didn't find any brain lesions. Maybe in my case, due to the earlier back injuries, I am just super sensitive to any exertion at all as the bloodstream to the spinal cord is reduced? Dalton Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: <[email protected]<mailto:[email protected]>> Reply-To: <[email protected]<mailto:[email protected]>> Date: Wed, 9 Mar 2011 10:57:41 +0000 To: Gary Thomas <[email protected]<mailto:[email protected]>>, Dalton Garis <[email protected]<mailto:[email protected]>>, Janice Nichols <[email protected]<mailto:[email protected]>>, <[email protected]<mailto:[email protected]>>, TMIC <[email protected]<mailto:[email protected]>> Subject: Re: [TMIC] Connected? My husband was originally diagnosed with tm but because he kept getting "relapses" they began looking into other causes of symptoms. It was later discovered that he had lyphphoma which caused a leasion (sp) on his spinal column which looked like tm. He is the only known person where lymphoma penetrated the myelin. After radiation and chemo the leasion is gone but the spinal cord damage remains. Dalton recurring incidents are not typical of tm. I hope they are checking you for MS or other possibilities regarding your very unusual symptoms. Emily Sent from my Verizon Wireless BlackBerry ------------------------------------------------------------------------------ From: "Gary Thomas" <[email protected]<mailto:[email protected]>> Date: Tue, 8 Mar 2011 23:25:14 -0500 To: Dalton Garis<[email protected]<mailto:[email protected]>>; Janice Nichols<[email protected]<mailto:[email protected]>>; <[email protected]<mailto:[email protected]>>; TMIC<[email protected]<mailto:[email protected]>> Subject: Re: [TMIC] Connected? Dalton, Maybe I'm missing something, but what exactly are these "attacks" you describe? I don't understand what your neurologist calls "cycling" as far as worsening of TM symptoms. I have always understood, and have read somewhere, perhaps on this list or the TM Journal, that we have the onset of TM experiences (lesions on the spinal cord) which for most of of us is a one-time occurrence with possibly lasting symptoms, AND we have times of exacerbation brought on by physical or mental overexertion, maybe an illness such as even a cold and so on (I have worse banding from sitting too long or standing too long) which are not caused by further damage to the spinal cord but worsening of symptoms at least temporarily. So, again, Dalton, I am confused as to your attacks--could it be another lesion, could you be experiencing MS? I hope not, but just wonder what is happening--and forgive me for my curiosity. Gary in Michigan ----- Original Message ----- From: Dalton Garis<mailto:[email protected]> To: Janice Nichols<mailto:[email protected]> ; [email protected]<mailto:[email protected]> ; TMIC<mailto:[email protected]> Sent: Tuesday, March 08, 2011 1:58 PM Subject: Re: [TMIC] Connected? Hi; Thanks for your support. I got another attack today. It started slowly with pain in my feet and hands yesterday, which became weaker by the hour. Then it slowly worked itself up the legs and arms today, weakening me as it went. Then it hit my lower and upper back, and I could no longer stand up, and am now unable to walk without the aid of crutches, and only for a few yards. When it got really bad today, I was unable to speak more than a few words without causing convulsions in my back and arms. After a while I could speak again. I had to be careful with the swallowing which was no longer on automatic. Same with urinating. It took great concentration to sort of identify the nerves and wake them up. There were moments when I could not feel my legs and didn't know if I could move them. Again, it took concentration to wake the nerves up and get the legs moving again. The pain in the legs and arms and back is terrific and nothing touches it. My neurologist has told me that there are, of course, stronger medications which can mostly arrest this cycling and give me some peace. But also, of course, they would make me a zombie for most of the day and I would likely become unable to work any longer. I am happy to be able to type again. It is five minutes before eleven pm and I can finally work my hands a little, for typing, making coffee, and getting some snacks from the fridge. Well, I wrote all this because some have been saying that it is vey quiet. So here's a raft of symptoms to look at. Thanks so much, friends, for being here. Dalton Garis Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: Janice Nichols <[email protected]<mailto:[email protected]>> Date: Mon, 7 Mar 2011 10:31:30 -0600 To: Dalton Garis <[email protected]<mailto:[email protected]>>, <[email protected]<mailto:[email protected]>>, TMIC <[email protected]<mailto:[email protected]>> Subject: Re: [TMIC] Connected? Dalton, no, but I do have cycles of feeling okay and then feeling more discomfort from nerve pain and spasms. Can't believe the doc's can't get you under control better than that. How about going to one of the best known hospitals - especially those fairly familiar with TM? Or, maybe you have. All it takes is one doctor who can understand what is going on with you - hopefully. I realize you are also trying to hold down a job and you have the pressure from that to always be there, but I just can't believe there isn't some way this can be controlled. I wish you the best. Janice From: Dalton Garis<mailto:[email protected]> Sent: Sunday, March 06, 2011 9:57 PM To: [email protected]<mailto:[email protected]> ; TMIC<mailto:[email protected]> Subject: Re: [TMIC] Connected? So; I can report that I have about a 5-day period wherein I am mostly free of severe difficulties, able to walk with a cane and to work for about 6 hours of the day. After this interlude, I have two or three days of extreme weakness and convulsions limiting me to the big Morris chair or to bed. That has been my cycle for about three months now. It will be one year since my first violent attack of convulsions of 23 April 2010. Anyone else have this kind of almost weekly cycling of symptoms? Thanks, Dalton Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: <[email protected]<mailto:[email protected]>> Reply-To: <[email protected]<mailto:[email protected]>> Date: Mon, 7 Mar 2011 00:56:44 +0000 To: TMIC <[email protected]<mailto:[email protected]>> Subject: [TMIC] Connected? Resent-From: <[email protected]<mailto:[email protected]>> Resent-Date: Sun, 6 Mar 2011 16:57:59 -0800 Hello Haven't been getting posts from TMIC- but have about ldn. Did group change? Its interesting and New people - I don't know how but - if group changed that's ok. If it didn't what do I need 2 do 2 get back on. Are All posts from past week only about low dose naltrexone? Thanks :) jackduv Sent via BlackBerry by AT&T
