Hey Bekki, I just want to add that their are a lot of doctors who refuse to use steroids still. If it's not in the computer data base as evidence based medicine, they will refuse to use it, especially some of the young ones. I've ran into this more than once. So, if you received a small dose, I wouldn't judge anything by that. The proof that it works is considered antedotal by the research guru's. This is a part of the "new" medicine that I find frustrating. I remember going into report one day and one of the "seasoned" nurses saying, we're trying this new treatment to stimulate the kidney in acute tubular necrosis. Guess what? It was the same treatment I had observed and administered for several years before moving out west. So it was actually and "old" treatment that hadn't been adequately documented in the evidence based computer programs.
From: [email protected] To: [email protected]; [email protected] CC: [email protected] Subject: Re: [TMIC] what do i do Date: Tue, 21 Feb 2012 18:49:52 -0600 Bekki, you apparently had a very light case. While I was in the hospital, one of my nurses told me of a friend of hers whose son contracted the disease. He was away in college and had a very severe flu that put him in the hospital. For 3-4 days he could not walk, then got his leg strength back. There are a few lucky ones that get hit with a really light case, just as there are those unlucky enough to have a severe case. Janice From: James Berg Sent: Tuesday, February 21, 2012 2:06 PM To: Bekki Briggs Cc: transverse myelitis Subject: Re: [TMIC] what do i do That is not really a lot of steriods. My IV steriods was for 6 days, with a new bag every eight hours-you are very lucky. I lost my legs, bladder and bowels in an eight hour period. I have been in a wheel chair ever since. My question is, was there someother treatment that 'cured' your symptoms? Jim On Mon, Feb 20, 2012 at 1:44 PM, Bekki Briggs <[email protected]> wrote: Hi, I've had TM for nearly 2 months now, I am pleased to say I'm nearly over it all, fingers crossed, I couldn't walk properly and had numbness all over except my head and face, I had 3 days of Iv steroids 30 mins each day. I would just like to say I admire how strong you are, everyone who has or has had TM, its very difficult to come to terms with but I was blessed with a loving girlfriend who helped me and pushed me to stay strong, glad u have the same, sorry for the essay lol Date: Sat, 18 Feb 2012 09:50:29 -1000 Subject: Re: [TMIC] what do i do From: [email protected] To: [email protected] CC: [email protected]; [email protected]; [email protected] 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 <[email protected]> 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 <[email protected]> Date: Fri, 17 Feb 2012 09:11:38 -0600 To: Cansadia Dykes <[email protected]>, Transverse Myelitis <[email protected]> Subject: Re: [TMIC] what do i do Resent-From: <[email protected]> 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 <[email protected]> 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. Had pelvic fractures, didn't know how I did it (one of the worst pains you can ever have). Due to my first diagnosis (Spine tumor) had damage to my spine which has caused me to have loss of sensation from my waist down. This is a really weird feeling. Have to be extra careful since I do not know when I have cut myself, stepped on anything hot or cold, etc. Thanks for listening. This week was crazy. My mother in law passed away Monday (she was 91 had a great life), became a grandmother for the first time (of course the MOST beautiful baby in the world - think all new granny's say that and then found out about my new lesions). Can't wait until next week (tee hee) PS - I haven't learned how to go to anyone's blog, use twitter or facebook. would like to learn since someone indicated you can reach out and touch more folks that way. Candy ________________________________ From: Janice Nichols <[email protected]> To: Pat Cooley <[email protected]>; Cansadia Dykes <[email protected]> Cc: [email protected] Sent: Sunday, February 5, 2012 11:05 AM Subject: Re: [TMIC] what do i do Candy, Patti in right. Just tell your story, state any questions you may have (or concerns), and we will try to help you. We have members that have been here from 1 year to 25 years. Many tell of family support, if friend's support, location, vocation if not retired, how much help doctor's have been with medications, etc. Most of us are on similar medications. We call ourselves "TM'ers" for Transverse Myelitis. At this point, what problems did TM leave you with. Most of us also have problems with our bladders and bowels. You can answer all of these or none of them. It is up to you. You will find that there really isn't much that hasn't been brought up and discussed, after all, we are all fighting the same battle. We are very open with each other. My best to you, Janice, Missouri -----Original Message----- From: Pat Cooley Sent: Sunday, February 05, 2012 9:16 AM To: Cansadia Dykes Cc: [email protected] Subject: Re: [TMIC] what do i do Candy welcome to our TM group. I am sorry it had to be under these circumstances. What we usually do is tell your story which we can all relate to. Feel free to ask any questions that you may have and someone will try to answer it. Also, we also have several Facebook sites you can join if you are interested; and are on FB. If so, befriend me and I will add. The FB site is a busy one so you will be able to reach more of us with your questions. If interested, you can find me under Pat Cooley. Patti in Wisconsin On Sat, Feb 4, 2012 at 9:06 PM, Cansadia Dykes <[email protected]> wrote: hi, I am new so not sure how to learn about others who may be having the same illness as me. thank you. Candy
