Transverse Myelitis

Join the Conversation on
Transverse Myelitis
775 people
0 stories
134 posts
  • About Transverse Myelitis
  • Explore Our Newsletters
  • What's New in Transverse Myelitis
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Hi I'm new first time posting

    It's been really difficult, keeping a positive mindset through all of this. But I'm glad to find a place to talk about my journey. With others going through the same
    #TransverseMyelitis

    Post

    I’m new here!

    Hi, my name is corbin710. I'm here because if become a hermit and I really just want to get my life back.

    #MightyTogether #TransverseMyelitis

    2 comments
    Post

    How many of you are first diagnosed with transverse myelitis and then a few years later they say you had it but now have myelopathy or stenosis etc?

    #TransverseMyelitis

    Post
    See full photo

    My "caretaker"

    This is Booba, whose given name is Mera, but none of our babies, human or otherwise, ever get called by their actual names. She's the baby of our seven cats, and she's always right next to my wheels. She even likes to "help" me in the bathroom by licking my hair and pulling the washcloth off my face to make sure that I'm still there. She sleeps on my legs and, at times, on my head.

    It's funny what we all find comforting, isn't it? 😊

    #ChronicPain
    #Upallnight
    #TransverseMyelitis
    #FibroFog
    #MyalgicEncephalomyelitis

    6 comments
    Post

    Epilepsy

    Yesterday I had an EEG and my neurologist called today, saying I have epilepsy. This just happened, so I don't know the cause of it.He put me on 250 MG Devalproex. I also have transverse myelitis and a couple of kinds of brain lesions. This is a whole new journey,

    7 comments
    Post

    Anybody else have MS and Transverse Myelitis

    I was diagnosed with Transverse Myelitis in June 2004 and MS upon a relapse in January 2016. Just wondering if anyone else finds themselves in my particular illness boat.  All the best to every one of us
    #MultipleSclerosis

    1 comment
    Post

    Fellow TM Warriors

    How is everyone doing with TM? I picked it up in June 2004 and have been fighting it like hell since then.  All the best to every one of us!
    #TransverseMyelitis

    Post

    Hospital Life, Anyone else doing time for your condions?

    I am currently in the Hospital. Very lonely and bored! Anyone else? Looking for connections with people with similar conditions. Hospital or not.

    #Gastroparesis #EhlersDanlosSyndrome #Dysautonomia #TPN #Gtube #HospitalLife #TransverseMyelitis

    10 comments
    Post

    Undiagnosed Autonomic Problems

    Hi. I had an attack of Transverse Myelitis fourteen years ago in 2007. Thankfully, I have had a great deal of recovery with only slight disability remaining. A year and a half ago I had a meal at a restaurant with a friend. About half an hour later I passed out. My blood pressure went extremely low. I was taken to the hospital by ambulance. I was released a few days later with no diagnosis. Then, last September (2020), I had a second episode of Postprandial Syncope. I had eaten a veggie burger and some tempura green beans, so not a huge meal. I was subsequently hospitalized. A Cardiac Tilt Table Test showed abnormal autonomic function. My cardiologist said it was due to my heart having difficulty pumping blood back to my upper body due to my Transverse Myelitis lesion at T5-7. MRIs done at that time show my old TM lesion as well as two brain lesions that are enlarging, one in my right Inferior Frontal Lobe and one in my left Pons. My MRIs show a history of smallStrokes. They also show increasing white matter. These were compared to MRIs done fourteen years ago when I had my TM attack. I recently wore a Holter monitor, and it shows that my heart function is good.



    My Neurodegerative Deseases doctor told me I don't have Multiple Sclerosis. I had a genetic test for hereditary Transthyretin Retinol Amyloidosis (hATTR). Thankfully, it was negative. A week ago I had two hours of Autonomic Testing including a Neurological Tilt Table Test. I also recently had two Biopsies on one of my legs that will be analyzed with a Red Stain Test. I haven't gotten back results for either of these.



    Besides the Postprandial Syncope, and bouts of serious frequent Diarrhea, I also have an increasing problem with Myoclonus. It occurs frequently when I am ill of tired. I do not loose consciousness during these seizures. This has been going on for years, but is now getting much worse.



    Besides Transverse Myelitis, in 2007 I was diagnosed with Antiphospholipid Syndrome. In 1991 had Thyroid Cancer with Follicular Adenoma and Papillary carcinoma. I have post surgical Hypoparathyroidism from that surgery. In 1984 I had a hysterectomy due to a ruptured Uterus with Adenomyosis. About a year and a half after that, I had an Oophorectory because of rupturing blood filled growths on my ovaries. I also have well controlled Adult Onset Asthma.



    I'm listing all this old medical history because who knows, maybe it bears some relationship to my current Autonomic problems.



    My question is, does anyone have anything resembling my weird cluster of symptoms, especially the digestive problems and myoclonus? Please let me know if you do. I feel very alone in this journey and would appreciate any suggestions on what to pursue with my Neurodegerative Specialist.

    7 comments