When trying to find information relative to Transverse Myelitis and its’ treatment you may become very frustrated. On this page I will try to list resources and referrals that may be of assistance to you. Additionally, if you have any great resources, please let me know and I will list them here for the benefit of all. Thank you 🙂
Transverse Myelitis Folks – This is an excellent resource that can be found on Facebook. I was thrilled when I found this site. It is a “closed” site which means that the site is private and can not be seen unless you are friended. This site is a forum where you are able to ask the most intimate questions regarding TM without feeling embarrassed. TM Folk respond quickly and honestly with their personal experiences and with referrals, suggestions or recommendations. Their URL is as follows: https://www.facebook.com/groups/TMFolk/
My wife has TM and it’s been almost 5 months now. She is paralyzed from the waist down. She has stinging sensations and hypersensitivity throughout her legs from time to time. Disfunction in her bowls and she is has to be Catheterized. It’s a very slow process but need some information on what are the recovery signs. Can you help.
Sydney, I hope this email finds you and your wife doing well. I believe that I responded to you previously but I can’t find evidence of doing so. Please feel free to give me a call at 714-931-7375.
My situation is very similar to yours. I had a stroke to the inside of my spine in November 2010. I was told that my immune system was working overtime and that I had a stroke to the inside of my spine. After seeing my first Neurologist and finding out that it was my thoracic area that controls the left side of my body and that the sparatic movements in left leg and foot was “restless leg syndrome ” and added to the mix of pain killers, muscle relaxers, another medication that made me sleepy and caused even more clumsiness. As a result I went undiagnosed for 4 to 5 years! My doctor (that’s primary care doctor) assumed treating me, referring me to physical therapy and treating just my symptoms with narcotics for pain and muscle relaxers…and physical therapy for weakness to my left side. That right! Now I was working on machines and stairs just to get stability for my clumsiness. All good, right? I’m no doctor, but I trusted that he had my best interest in mind. I got a little better but never felt the same. I knew that something was wrong with my body. So, I asked for MRI because the CTScans I NEVER asked for kept showing minor things that comes with age. My doctor that’s the primary care doctor, continued to refer me to physical therapy. Felt crazy but followed his instructions.
In December of 2014,after being so tired from a cruise I went on in October 2014 I begin to get clumsier and started falling almost every day. I had my worst fall in August 25, 2014. Using cane going on w my limited daily regime it hit me hard in late November. One night my authritis and pains in my legs chest arms just went crazy. Such pain I’ve never experienced, not even child birth! So I got up and went to the emergency room. There I met another neurologist who was very interested in what was going on with me. Again, nothing showed on CT scans! Beginning to think I was insane, somewhere there was a Mary doll that was being critically abused!! Well this blessing was standing outside my room listening to ER Staff Doctor who was about to discharge me telling me to go to my primary care doctor next day. FRUSTRATION was about to get the best of me, so I went into the bathroom iand started to pray. I asked God, in the name of Jesus, to please let them find out just what was wrong with me and to give doctors knowledge to FIX it for me because He is in control.
The neurologist standing outside my room heard me, and came into the room to investigate just what the problem was with me . I told him and immediately he wanted me to have MRI done. God is so good, the MRIs were done (finally 4 years late) and it was found that my spinal vertebrae had grown together and the spinal fluid had calcified into bone. He wanted me to have de-compression surgery the next day. By this happening to me over a 4year period the type of surgery could not be performed in the front of my neck, had to go in through the back directly to the spine. Also, one of the most painful surgeries done. As a result I can’t look up and I have to turn half way around to look back. That special neurologist that came to my rescue told me not having surgery would cause me to be completely paralyzed from 4 to 9 months.Would only be able to communicate with my eyes only. Would not be able to feed myself, go to the bathroom by myself, not able to speak. I was on my way to becoming a vegetable. Sent me home with neck brace and walker. Told me the next fall or in event of a car accident, that the degree of complete paralysis from neck down was imminent.
Currently in ‘aquatic therapy’, my personal therapist is named Kelly (same as yours) pain so excruciating most of the time I’m now taking morphine. Going to pain management doctor now, so everything is being ‘Fixed!,’
God is in control (remembering my prayer in the ER bathroom) He does not want us to be ignorant but seeking knowledge. So, I apply this way of thinking to the life I’m forced to live now. I know I control nothing, but with giving this ailment to Him, I know my recovery is around the corner!
Mary Grayer
Again
Yes, our stories are quite similar and so crazy that both our therapists are named Kelly! I’m so glad to hear that God is in control over in your camp as well – lol. I could do nothing and be nothing without him!!!
My husband is 53 and has ATM. will this disease reoccur. will he be wheel chair bound some day???
Hello Diane, First let me say thank you for visiting my page. I have to be honest and tell you that I am not qualified to answer those questions for you. Hopefully you and your husband have a team of physicians that can address those matters for you. However, I will tell you that, “concerning ME”, my physicians never answered those questions with concrete information. The simple fact is that they simply do not always know. I was given statistics when I asked those types of questions so I stopped asking and relied on my faith and a therapy program consisting of continual hard work. I am still in recovery mode and this past September 11th marked 5 years from the onset date. Chronological age will certainly something to consider when thinking about recovery. And by that I mean that the age a person is diagnosed with TM will determine their plan of care. As an example, an infant who is affected by TM will certainly have a different plan of care than a 50 year old. I am a member of a great support group on Facebook called Transverse Myelitis Folks. I highly recommend that you apply to become a member of the group. It is a closed and private group to protect your privacy but once you are accepted in, you will find many medical references and the open forum allows you to ask the most intimate of questions without feeling embarrassed. This group has become my extended family and I highly recommend it.
After two and a half years of ” T M ” and or “M S ” or whatever anyone cares to call a set of “diseases” I have quietly come to realise that -at least – the cause of my “diseases ” are self inflicted .It is my uncontrolled deep internal rage – rage against God mainly who I saw as responsible for any problems that I had.
Internalising deep seated rage can and does cause any number of problems -physical -mental or spiritual. Everyone is responsible for their own well being .
I,m 63 and carry a lot of useless baggage .Why children get theses horror diseases I cannot say as they are clearly not responsible for self inflictions.
Hello Claudius, I find your comment to be very interesting and I do agree with you that anger, rage, stress, worry, resentment and many other negative thoughts and feelings are toxic to our well being. The physical manifestation of these things really can affect our lives in many adverse ways both physical, mental and in ways that Im sure that I don’t even have the capacity to understand. I hope that you have been able to release the rage you have felt and are able to move forward without it and the affects that it can have over your life.
Hiya,
Great site and I imagine really helps sufferers, and partners of sufferers too!
Can I ask whether you have found any benefits in controlling certain foods in your diet at all?
TM is all very new to us and we are looking at other options to help.
Thanks
Matt
Hello Matt, Thank you for the compliment and forgive me for the delay in responding. I certainly hope that my experience can help someone that may be sharing experiences similar to my very own. Regarding food, I honestly believe that my bad eating habits contributed to my onset, along with high levels of stress. The simple fact is that no one knows what the root cause is for TM onset. This leaves us open to much speculation. I belong to a private Facebook group called Transverse Myelitis Folks. It is a FANTASTIC forum for many reasons. You can ask questions, review educational documents on TM and similar conditions, rejoice, share stories and milestones, cry, talk to others, etc.