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Thread: Good Links to TM and Atraumatic SCI Info

  1. #1

    Good Links to TM and Atraumatic SCI Info

    http://www.myelitis.org/
    The Transverse Myelitis Association was founded in 1994 for people with rare neuroimmunologicd diseases, their family members, caregivers, and medical professionals. It has an excellent summary of Transverse myelitis: Symptoms, Causes, and Diagnosis by Joanne Lynn, MD. The TMA Forums are also very active and provide a great deal of information and contact with the TM community http://www.myelitis.org/phpBB2/

    http://www.ninds.nih.gov/disorders/t...semyelitis.htm
    The National Institutes of Neurological Disorders and Stroke (NINDS) has an excellent Tranverse Myelitis Fact Sheet on this site.

    http://www.hopkinsmedicine.org/jhtmc/
    The Transverse Myelitis Center at Johns Hopkins University is one of the best clinical centers for TM diagnosis and treatment in the United States.

    http://www.wrongdiagnosis.com/t/tran...itis/intro.htm
    The Wrong Diagnosis.com site has a comprehensive summary of causes and treatments of transverse myelitis.

    http://www.clinicaltrials.gov/ct/sea...&submit=Search
    There are not many clinical trials for transverse myelitis but www.clinicaltrials.gov is a good site to search for such trials.

    http://carecure.org/forum/forumdisplay.php?f=40
    This forum lists some of the latest published medical and research articles on transverse myelitis.

    Wise.

    I'd like to add a site that helps raise funds for TM research:

    www.ReadingforRachel.org
    Everything you need to participate in the Reading For Rachel program is located at the site. Adobe is needed to read much of it but several free download sites are avilable on site. For further information you can also contact Cathy@ ReadingforRachel.org. This is an excellent introduction for kids on how to help others or themselves. The site includes a great video of Rachel too.
    Last edited by Sue Pendleton; 09-07-2005 at 11:33 AM.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    If you have been diagnosed with TM (transverse myelitis) in any way, whether plain TM or as a secondary condition from Lupus., etc, please join the TM Association. They will send you a form to fill out that is used to statistically graph ages, geographcal areas of cases, causes, etc. You will get quarterly newsletters and it lists support groups in most large cities in the US and around the globe. Membership is free and there is also an international symposium for both professionals and consumers (patients and caregivers) every other year. The TMA is a non-profit consumer run group with many members you all should have heard of by now like Cody Unser and Jim Lubin (runs the quadlist and vent-users list among others.)
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
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    Low Dose Naltrexone (LDN)

    I was diagnosed with TM in January 2006. It has been hell I must say. Though, through my own research I found this website that I insist you read. It is on the generic drug Naltrexone - or in this case, Low Dose Naltrexone (LDN). Since taking it in September 2006 - it has changed my life. Yes, slowly giving it back to me. It also is a drug that will not destroy the body or kill you along the way. How about that huh.

    www.lowdosenaltrexone.org

  4. #4
    Do you have any upto date details of the TM association? Are they still active.

    Try
    www.myelitis.org/
    Last edited by Sue Pendleton; 07-01-2007 at 11:02 PM.

  5. #5
    Hello I am a new member and just read your post about LDN do you still take it can you give me more details and info about it. Thank you and good luck in your recovery. Bryan

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by bgorman23 View Post
    Hello I am a new member and just read your post about LDN do you still take it can you give me more details and info about it. Thank you and good luck in your recovery. Bryan
    Considering his public information says he has posted once and hasn't returned since the date of the post on LDN (I have no idea how he can post and still it says 0..) I think he may have been a seller/spammer. Many people with incomplete TM do take 4-AP that is compounded by many pharmacies and will be on the market in about 6 months as a prescription, long lasting formulation known as Fampridine by Acorda Therapeutics. It helps electric impulses jump the gaps in the myelin sheathing and can help with strength, sensation and bladder/bowel and sexual problems. It was approved by the FDA for those with MS but many MS specialists will put patients with TM on it. The compounded formula is not a long acting formula and even if advertised as "extended release" it mainly is just blended with some form of cellulose. You can search for many, MANY posts on CC using "4-AP", "4-aminopyridine" and "Fampridine". Oh, unlike the current MS drugs 4-AP is an oral medication.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #7
    Hello, Iam new with trying to ask questions, i read alot of the forums + learned so much thankyou. + about the 4-ap + tm was interesting. i went back to my Nuro acouple of monthes ago it was a year since my TM attack, had a MRi + inflamation is gone( t9 T11 conus started walking with walker + afo monthe 9 of coarse very short distances . Went to see Nuro in the chair it was a very early app. He said knew you would be in the chair, you have a lot of nerve damage to walk cause of very weak ankels almost none. it will be a year this month in therapy + walking around 400 ft. can people with nerve damage keep progressing?

  8. #8
    Super Moderator Sue Pendleton's Avatar
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    4-AP has been approved in the US by the FDA as Ampyra for those with MS. Since it has approval for MS more doctors are willing to prescribe it "off label" for TM, SCI and some other rare conditions. As long as your injury is incomplete and you can walk some then you may walk further on Ampyra. Maybe time to go see your neuro again after printing off some information from the net on this drug.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #9
    Senior Member Tbone57's Avatar
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    Quote Originally Posted by bbogden View Post
    I was diagnosed with TM in January 2006. It has been hell I must say. Though, through my own research I found this website that I insist you read. It is on the generic drug Naltrexone - or in this case, Low Dose Naltrexone (LDN). Since taking it in September 2006 - it has changed my life. Yes, slowly giving it back to me. It also is a drug that will not destroy the body or kill you along the way. How about that huh.

    www.lowdosenaltrexone.org
    How has it changed your life? Sounds like bullshit to me

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