Re: [TMIC] what do i do
Wow! Dalton really says it well. I was somewhat down this morning and then reading his email and remembering what you have been through, it pulled me up and I can move on today instead of feeling sorry for myself. What really got me was Dalton's reference to his wife and how she cares for him. I am very lucky to have a wife who also devotes herself to caring for me. for her it is a tough road to hoe because it has severely limited her life's activities. I too feel that this TM has been laid on me for a purpose and although I'm not sure what it is I keep trying to hold my head high and keep a smile on my face. I hope you can do the same. We all care about you and are here for you when you need us! Jim On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis malugss...@gmail.com wrote: HI CANDY; I have been following your story in this email system. You have been given a difficult row to hoe, as we used to say. I am convinced by what has happened to me and from hearing all these stories from others with T.M. That nothing happens without a purpose; and that we are being specialized spiritually and emotionally for a service of some kind. Others will watch us and take strength from our efforts to overcome our difficulties. I was dx-ed just over two years ago. Since then I have had to quit my job as associate professor of economics at an engineering school in the Middle East, because the one thing T.M. left me with besides the constant pain, is an anomaly from a lesion on the brainstem that causes partial complex seizures not controlled by medications. Now, I get many mild seizures, every couple of days or several per day. They keep me home now, but I can go out if someone goes with me to hold me up and take care of me if or when another spell comes. In spite of these difficulties, however, in some strange way my heart is at peace and happy. My dear angel of a wife takes such good care of me and is not upset when I become helpless for hours after a spell. I hope that you also will find some peace and inner happiness. Anyway, we are always here for you, as I have found out countless times when my inner strength became depleted. This group is always here to get your spirits up again, as often as is needed. God love them all, and you, too, Candy Dalton Garis Flushing, Queens New York From: Pat Cooley patticoole...@gmail.com Date: Fri, 17 Feb 2012 09:11:38 -0600 To: Cansadia Dykes kandyd...@yahoo.com, Transverse Myelitis tmic-list@eskimo.com Subject: Re: [TMIC] what do i do Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Feb 2012 07:15:22 -0800 Candy all you have to do is create a facebook page. I couldn't do it but my daughter sit it up for me. Once you do that all you have to do is find a facebook member request to be friended, that person can accept you as a friend and then set you up with our several TM sites. We have one just for us gals, then a general one for both men and women. It sure sounds like you have been through h - - l. There are plenty of us who can relate and give you plenty of advice. Good luck Patti in Wisconsin On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes kandyd...@yahoo.com wrote: i apologize again. I know I responded previously (had some family issues)but not sure to whom or when.I'll start over. I was initially diagnosed with neurosarcoidosis (this was tentative), they tried to rule out MS (think they have), back to ground of TM. However, TM should either turn into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more research and found a category of NMO Spectrum disorder. This fits my illness so far. Persons who remain in a TM status but may continue to have relapses etc. I continue to have relapses. Had one in October (Thoracic), increased my steriods back to 40 a day and changed me to CellCept. I have now had new lesions this month (February) in my cervical spine (this is a new area). Really having problems with walking and dragging both feet, my gait if off, memory loss, tightness, light a vice around my torso, back pain, and awful pain at the base of my neck up to my ears. Cannot lay flat on my back of my head. To painful I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone, Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and Lipitor. Vicodin prn. I plan to see my neurologist next week and will insist on plasma Pharisees. Everything I have researched indicates this is the best choice at this point. I had asked for this earlier (wished I had insisted). This would allow my blood to be cleaned as best it could and then allow the cellcept to work on keeping the (This is what I call them) goblins from ganging up on my immune system. Steroids have destroyed my body. I am now steroid dependent. Docs are hoping to get me down to 10 to 15 a day. Have just have cataract surgery on my eyes.
Re: [TMIC] Re: tmic-digest Digest V2012 #91
That is very accurate information Akua has provided not only to you,but to the whole community. I too have never heard of steroids being continuously prescribed. My doctors weened me off them after a few weeks. They didn't help anyway. Jim On Fri, Feb 17, 2012 at 6:37 PM, a...@artfarm.com wrote: On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: * what do i do* Wishing you the best, Candy. ™ does not turn into anything… there is no prescribed route for it. I am alarmed that you are prescribed steroids continuously --- the jury is out as to its efficacy as an intervention and I hadn't heard of it prescribed continuously. Sounds like you need may need some second and third opinions. When I was first in the hospital I made a list of the recommended drugs, looked each up got print outs and did a spread sheet of effect and side effects. My recent tests included a CT scan, lung capacity and bone density. My bone density has diminished from my paralysis and (perhaps) steroid use. My vitamin regimen includes calcium, D, Folic acid, iron to remediate the losses due to ™. Hopefully you've had a blood screen -- became anemic as a result of this condition. Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an 8 is now about a 3 and i only take one drug for ™ -- low dose naltrexone. That all be well, Akua
Re: [TMIC] what do i do
Between all 3 of your comments, I think it was all well said. Living with TM – plus any other problems that may also exist with our bodies – is living with a “Cross to Bare”.In the 9 weeks of care required for me at the start of TM, my doctors said my situation and how I handled it made a change in those around me.We have this disease, there is nothing we can do about it except keep moving forward and get back as much of our lives as we had before TM as possible.In some ways, we can have more. I know I have changed in many ways since TM struck.This is our life now and we can garner much support and comfort from family and friends – it means a lot.Candy, I hope you listen to Akua and seek other opinions from doctors. You seem to have been medicated, etc., much differently from any of us and we are concerned.More opinions will not hurt you at all, wrong meds and info will. Good luck and keep emailing to us - we care Janice From: James Berg Sent: Saturday, February 18, 2012 1:50 PM To: Dalton Garis Cc: Pat Cooley ; Cansadia Dykes ; Transverse Myelitis Subject: Re: [TMIC] what do i do Wow! Dalton really says it well. I was somewhat down this morning and then reading his email and remembering what you have been through, it pulled me up and I can move on today instead of feeling sorry for myself. What really got me was Dalton's reference to his wife and how she cares for him. I am very lucky to have a wife who also devotes herself to caring for me. for her it is a tough road to hoe because it has severely limited her life's activities. I too feel that this TM has been laid on me for a purpose and although I'm not sure what it is I keep trying to hold my head high and keep a smile on my face. I hope you can do the same. We all care about you and are here for you when you need us! Jim On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis malugss...@gmail.com wrote: HI CANDY; I have been following your story in this email system. You have been given a difficult row to hoe, as we used to say. I am convinced by what has happened to me and from hearing all these stories from others with T.M. That nothing happens without a purpose; and that we are being specialized spiritually and emotionally for a service of some kind. Others will watch us and take strength from our efforts to overcome our difficulties. I was dx-ed just over two years ago. Since then I have had to quit my job as associate professor of economics at an engineering school in the Middle East, because the one thing T.M. left me with besides the constant pain, is an anomaly from a lesion on the brainstem that causes partial complex seizures not controlled by medications. Now, I get many mild seizures, every couple of days or several per day. They keep me home now, but I can go out if someone goes with me to hold me up and take care of me if or when another spell comes. In spite of these difficulties, however, in some strange way my heart is at peace and happy. My dear angel of a wife takes such good care of me and is not upset when I become helpless for hours after a spell. I hope that you also will find some peace and inner happiness. Anyway, we are always here for you, as I have found out countless times when my inner strength became depleted. This group is always here to get your spirits up again, as often as is needed. God love them all, and you, too, Candy Dalton Garis Flushing, Queens New York From: Pat Cooley patticoole...@gmail.com Date: Fri, 17 Feb 2012 09:11:38 -0600 To: Cansadia Dykes kandyd...@yahoo.com, Transverse Myelitis tmic-list@eskimo.com Subject: Re: [TMIC] what do i do Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Feb 2012 07:15:22 -0800 Candy all you have to do is create a facebook page. I couldn't do it but my daughter sit it up for me. Once you do that all you have to do is find a facebook member request to be friended, that person can accept you as a friend and then set you up with our several TM sites. We have one just for us gals, then a general one for both men and women. It sure sounds like you have been through h - - l. There are plenty of us who can relate and give you plenty of advice. Good luck Patti in Wisconsin On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes kandyd...@yahoo.com wrote: i apologize again. I know I responded previously (had some family issues)but not sure to whom or when.I'll start over. I was initially diagnosed with neurosarcoidosis (this was tentative), they tried to rule out MS (think they have), back to ground of TM. However, TM should either turn into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more research and found a category of NMO Spectrum disorder. This fits my illness so far. Persons who remain in a TM status but may continue to have relapses etc. I continue to
Re: [TMIC] Re: tmic-digest Digest V2012 #91
Yes; I had four days of steroid drip in the beginning to reduce the spinal inflammation and hopefully prevent any new lesions. But that was during the initial stage when my spine seemed to be on fire. But after that I only received a steroid drip during a flair-up about six month's later, but no more often. Pleas Please try to see someone else if you can. You can go to Webmd to search for a doctor who knows about TM/MS. Best, Dalton From: James Berg molokai...@gmail.com Date: Sat, 18 Feb 2012 09:54:21 -1000 To: a...@artfarm.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Feb 2012 11:58:02 -0800 That is very accurate information Akua has provided not only to you,but to the whole community. I too have never heard of steroids being continuously prescribed. My doctors weened me off them after a few weeks. They didn't help anyway. Jim On Fri, Feb 17, 2012 at 6:37 PM, a...@artfarm.com wrote: On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: what do i do Wishing you the best, Candy. does not turn into anything there is no prescribed route for it. I am alarmed that you are prescribed steroids continuously --- the jury is out as to its efficacy as an intervention and I hadn't heard of it prescribed continuously. Sounds like you need may need some second and third opinions. When I was first in the hospital I made a list of the recommended drugs, looked each up got print outs and did a spread sheet of effect and side effects. My recent tests included a CT scan, lung capacity and bone density. My bone density has diminished from my paralysis and (perhaps) steroid use. My vitamin regimen includes calcium, D, Folic acid, iron to remediate the losses due to . Hopefully you've had a blood screen -- became anemic as a result of this condition. Just a few thoughts. left me paralyzed and in pain, BUT my pain once an 8 is now about a 3 and i only take one drug for -- low dose naltrexone. That all be well, Akua
Re: [TMIC] Re: tmic-digest Digest V2012 #91
my Dr had me on steroids for about a week to slow my auto immune system way down because that was what was attacking my spine.i havent had them since. From: Dalton Garis malugss...@gmail.com To: James Berg molokai...@gmail.com; a...@artfarm.com Cc: tmic-list@eskimo.com Sent: Saturday, February 18, 2012 5:39 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 Yes; I had four days of steroid drip in the beginning to reduce the spinal inflammation and hopefully prevent any new lesions. But that was during the initial stage when my spine seemed to be on fire. But after that I only received a steroid drip during a flair-up about six month's later, but no more often. Pleas Please try to see someone else if you can. You can go to Webmd to search for a doctor who knows about TM/MS. Best, Dalton From: James Berg molokai...@gmail.com Date: Sat, 18 Feb 2012 09:54:21 -1000 To: a...@artfarm.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 18 Feb 2012 11:58:02 -0800 That is very accurate information Akua has provided not only to you,but to the whole community. I too have never heard of steroids being continuously prescribed. My doctors weened me off them after a few weeks. They didn't help anyway. Jim On Fri, Feb 17, 2012 at 6:37 PM, a...@artfarm.com wrote: On Feb 17, 2012, at 10:40 PM, tmic-digest-requ...@eskimo.com wrote: what do i do Wishing you the best, Candy. ™ does not turn into anything… there is no prescribed route for it. I am alarmed that you are prescribed steroids continuously --- the jury is out as to its efficacy as an intervention and I hadn't heard of it prescribed continuously. Sounds like you need may need some second and third opinions. When I was first in the hospital I made a list of the recommended drugs, looked each up got print outs and did a spread sheet of effect and side effects. My recent tests included a CT scan, lung capacity and bone density. My bone density has diminished from my paralysis and (perhaps) steroid use. My vitamin regimen includes calcium, D, Folic acid, iron to remediate the losses due to ™. Hopefully you've had a blood screen -- became anemic as a result of this condition. Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an 8 is now about a 3 and i only take one drug for ™ -- low dose naltrexone. That all be well, Akua
Re: [TMIC] Re: tmic-digest Digest V2012 #91
*Hey Dalton and all TM Family, In my initial care 22 years ago, I was put on an IV drip of steroids for my 2 month stay in the hospital. My immune system is shot; period. I have to take all kinds of precautions to make sure I don't get sick. But it happens now and again no matter how hard I try. My TM was called idiopathic by some doctors, some said it came from the flu I had just gotten over. Regardless of what it's cause was, when I get sick I start feeling tingling in my hands and arms, upper abdomen and face. Every time the treatment is a mass dose of steroids, as the doctors believe that is recurring TM, I've had 5 episodes over the years. I have grown to hate steroids, they make me miserable, cranky, I get insomnia, migraine headaches, and I gain weight which is very hard to lose when your my age and stuck in a chair. But if these drugs are keeping me from deteriorating any further, I'll take them until my last days if need be. Just my 2 cents of sharing... Peace, Bernie in Texas PS - Sorry if the typing is large, my eyes have gotten real bad this past year. From:Dalton Garis malugss...@gmail.com To: James Berg molokai...@gmail.com; a...@artfarm.com Cc: tmic-list@eskimo.com Sent: Saturday, February 18, 2012 5:39 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2012 #91 * * * *Yes;* * * *I had four days of steroid drip in the beginning to reduce the spinal inflammation and hopefully prevent any new lesions. But that was during the initial stage when my spine seemed to be on fire.* * * *But after that I only received a steroid drip during a flair-up about six month's later, but no more often.* *Pleas* *Please try to see someone else if you can. You can go to Webmd to search for a doctor who knows about TM/MS.* * * *Best,* * * *Dalton*
