Transverse Myelitis

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Transverse Myelitis
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    What's New in Transverse Myelitis
    Community Voices
    Community Voices

    My "caretaker"

    <p>My "caretaker"</p>
    6 people are talking about this
    Community Voices

    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 people are talking about this
    Community Voices

    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

    1 person is talking about this
    Community Voices

    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!

    Community Voices
    Community Voices

    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 people are talking about this
    Community Voices

    Recent Neurological Attack

    In the beginning of September I was out of state when I had an attack that caused me to need to seek medical attention. I had eaten a meal, veggie burger and tempura green beans, so not a super large meal. I stood up and passed out. In fact, I passed out four times before I really woke up. My speech was slurred. My friends had me lie down on couch, where I started having pretty violent myoclonus in my neck, weird rippling muscle contractions in my legs and spasming of my arms. Since I was out of state, my insurance would cover ER visit, but not hospitalization! Next day I still felt worn out and had diarrhea, but things got better as the day wore on.

    I called the nurse line for my insurance. They suggested stroke and told me not to drive, but get home ASAP and seek medical treatment. A friend drove me home (two day drive). I went to the ER and was admitted to hospital.

    For background: Almost 14 years ago I had an attack of Transverse Myelitis in which I became partially paralyzed and experienced a great deal of pain. Thankfully, I did have a substantial recovery. I also have Antiphospholipid Syndrome. MRIs from that time showed a TM lesion at T5 with damage at T5-7, two small lesions on my left Pons and two small lesions on my right Inferior Frontal Lobe.

    Three and a half years prior to my recent experience I had a similar attack after a meal out with a friend. That one landed me in an ambulance ride to a hospital. They said my blood pressure was dangerously low. At the hospital they did a CT scan, but they did no MRIs; and I left hospital three days later with no diagnosis.

    Well, during my recent hospital stay, they did MRIs and compared them to the ones taken almost 14 years ago. The four lesions on my brain have enlarged and I have an increase of white matter. They also did a Tilt Table Test which successfully provoked another episode of Syncope and subsequent Myoclonus. (They had to pad the rails of the hospital bed.) I was diagnosed with Dysautonomia.

    Having Transverse Myelitis, I know that it can lead to a diagnosis of Multiple Sclerosis. I find that I have five symptoms that point to MS. The Cardiologist put me on Crestor and also Midodrine to increase my blood pressure, told me to wear 20-30 mmHg compression hose and drink electrolytes daily.

    I had another episode of syncope on a very hot day few days ago while I was seated, which I hear is unusual.

    Yesterday I went to a Neurologist who is not an MS specialist. He reviewed the MRI images and told me that the uptake in the brain lesions is not consistent with MS Lesions. He referred me to a "Super Specialist" who treats neurodegenerative disorders. I called their office and was told that this doctor will review my records and let me know in two days if he will see me as a patient. I know two days is not a long time, but it seems an interminable wait when I have this monster in my head. I'm scared and I want to find out what is going on and if there is any viable treatment.

    3 people are talking about this
    Tatiana Lee

    Wheelchair-Using Nurse Treating COVID-19 Patients in NYC

    Tatiana Lee is a Hollywood Inclusion Associate at RespectAbility. Andrea Dalzell, RN, BSN, was told that she would never be able to become a nurse due to her disability. Today, she is one of the few registered nurses who uses a wheelchair. Currently, she is working in one of the areas hardest hit by COVID-19 – the New York metro area. Dalzell is a disability advocate and represented her home state as Ms. Wheelchair New York in 2015. She studied biology and neuroscience in college while earning her associate’s and bachelor’s degrees in nursing. Dalzell was diagnosed with transverse myelitis at the age of 5 and began using a wheelchair full-time at the age of 12. Dalzell shares firsthand about her journey to becoming a nurse, why it’s important for people with disabilities to be in the medical industry, and advice for wheelchair users in the current climate of COVID-19. Q: What was your inspiration for becoming a nurse? A: I never wanted to be a nurse. As a child, I wanted to be a lawyer. I was going to sue all the doctors that caused me any extreme amount of pain. As a teen I said I would become a doctor. I was going to help spinal cord injury and illness patients because half the doctors I ever saw knew nothing about my disability. While studying for medical school and auditing medical school classes, I realized doctors treat the disease and I never wanted to look at someone as a disease, but as a whole person. Nurses do that and that’s where my mindset shifted to nursing. Q: What challenges have you faced getting to this point in your career as a person with a disability? A: Like any person with a disability, an ability is often shadowed by the visible component of a physical mobility device. My wheelchair often created this sense of inability for those who didn’t know me. In high school, I was told that I would only go to a community college and live off of Social Security for the rest of my life. (That was because I refused to take the yellow bus to school and demanded a Metro Card to get on the city bus). My first day of nursing school-mandated orientation, I was told I could leave because they were unsure if I would be able to participate in the program and they would get back to me. I decided to stay and after the orientation, I went to my college diversity and compliance office to file an ADA discrimination report because I had already been accepted to the program, they couldn’t deny me now. During my clinical rotations, I was often pulled off hospital units because I was told that I was an infection risk, or my wheelchair was a safety hazard. I was questioned on my abilities more than any of my peers and often told I could not or would never be an acute care nurse. Q: Why is it important for people with disabilities to have the opportunity to become medical professionals? A: I am a firm believer in the fact that just because you treat a disability, doesn’t mean that you can speak on disability. Having us in the professional field exposes holes in the care given and received in not only hospitals but in clinics and access to said care. The understanding and experience is different. Any person with any type of disability can be a nurse. The misconception comes with the false assumption that a disability means you’re incapable. Every single person’s ability is different. What I am able to do at my injury level may not be another person’s ability at the same level. Our voice can change the whole system. Q: What does your disability bring to the table that makes you a better nurse? A: Perception. I don’t automatically see inability in a person. My bedside manner is above and beyond the average nurse or doctor. My ability to be innovative under stressful circumstances is vital, especially during the current pandemic. Q: What would you say to employers who want to consider hiring people with disabilities to work in the medical profession? A: Have an open mind and give a fair chance. Own up to that diversity statement on the company website. See the value that a difference can bring to the company. Q: What does a typical workday look like for you in the current climate of COVID-19? A: To be honest, I’d rather not answer this question. Most nurses do not want to answer this question. I will tell you this much, it is nothing I have ever seen, or want to see again. It is beyond stressful and taxing emotionally and physically. The main point is I am doing the job, doing the job well and not finding the issues that were supposed to make this job impossible for a wheelchair user. Q: What do you want the public to know about the current pandemic we are facing? A: The use of gloves is not good! Wheelchair and mobile device users are using gloves as a way to protect themselves when in actuality, it is causing more contamination. Most will say their doctors told them to. That’s fine, but then understand how to use them and when to use them. If you are going to disinfect every item you touch with them off and then again with them on, it’s the only way to prevent contamination and even then, the likelihood of cross-contamination is extremely high. Q: What advice do you have for people with disabilities wanting to enter the medical profession? A: Believe in yourself enough to know your worth and that you belong. This profession will try to shut every door until we collectively say we belong. We are here, we can do the job. Don’t worry about the school loans, just apply and go for it! Follow Andrea Dalzell on Instagram @theseatednurse. For more on the coronavirus, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me How America’s COVID-19 Response Is Exposing Systemic Ableism I’m Afraid I’ll Be Told to ‘Sacrifice’ My Health for COVID-19 Patients Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages

    Community Voices