Multiple Sclerosis symptoms 3 years on Tecfidera

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  • Опубликовано: 5 окт 2024

Комментарии • 50

  • @jleemassage
    @jleemassage 2 года назад +1

    Thank you for sharing , taking my first pill tecfidera today , just diagnosed in July , just starting my journey .

  • @BorisG13
    @BorisG13 2 года назад +2

    Thank you so much for this video! As someone who has been recently diagnosed and will start with Tecfidera this was very helpful!

    • @Itsme1.
      @Itsme1. 2 года назад

      Same ! i had diagnosed 4 months ago and started with tecfidera

  • @ope4r540
    @ope4r540 5 лет назад +3

    Hi Selma. Thank you for sharing. I'm sorry to hear that you're feeling so symptomatic. I too had bad fatigue and a couple of relapses; it was awful. I was also diagnosed in 2015. I went to see a new Neurologist a few years, and they recommended I switch from Tecfidera to Ocrevus. The fatigue has gone away and I can function. Now, it has slowed some symptoms down but MS is relentless. I used to refer to the right side as my "problem side." Now I see that the left side of my body is acting up. But I won't stop using the medication. I don't want you to despair. Please tune into Dr. Aaron Boster, he works at the MS Clinic in Cleveland, Ohio. He provides great advice for those of us battling MS. He has many viewers tunning in from all AROUND the WORLD. If you ever tune into one of his Livestreams, and click LIVE CHAT, you see where all these people are from and the questions they ask. You can ask a general question and he may answer it during the live stream. But one thing I recommend you do, is get a second opinion from another Neurologist. Don't feel obligated to stay with your current Doctor. You're facing challenges that are affecting your physical and mental health. Feel free to reach out if you have any questions. I wish you better days. Cindy 💐

  • @bethmcclure5311
    @bethmcclure5311 5 лет назад +4

    I too have MS, diagnosed 3 yrs ago. I have been on tysabri, ocrevus both having allergic reactions, now on tecfidera. I take 5000 iu of vit d, 5000 mcg of b12 and I use melatonin to help me sleep. Good luck on your journey 😀

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад

      Thanks so much for your reply, I'm sure any comment matters as patients with M.S need all possible opinions. Keep strong

  • @MizAye12
    @MizAye12 5 лет назад +1

    Thank you, thank you, thank you!! This is the most authentic and organic account I have seen so far!! Thank you for sharing your story!! I too had a major relapse last year which brought a lot of symptoms and made my MS experience more “real” for me too! I was diagnosed about 5 years ago.

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад

      May God bless you too and everyone around you, i just felt that the way I look for clues on internet when I try to find similarities to what i am going through, there might be others that would want to understand the outcome of their road ahead with multiple sclerosis. Thank you for your comment.

  • @anonymousgirl799
    @anonymousgirl799 5 лет назад +2

    Hello Beautiful, thank you for posting. I was diagnosed with Relapse/Remit MS in Jan. 2017. Two years later I am now Primary Progressive, with mobility issues, and a very weak left leg. I tried Tecfidera, but stopped taking early after diagnosis, as I was working with a corrective chiropractor, physical therapist and acupuncturist, and was improving. I lost everything, relocated to live with my mother, had no health insurance, and got worse. I'm now on Ocrevus. MS is such a roller coaster ride, and I wish you all the best on your recovery!!!!!

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад +2

      Wow my heart goes out to you, you can also text me on my fb page selman alexandra. It's a brave and helpful act to come forward with such story. Here for you.

    • @anonymousgirl799
      @anonymousgirl799 5 лет назад

      @@sselmanalecsandra
      Thanks so much, I will be in touch!

    • @anonymousgirl799
      @anonymousgirl799 5 лет назад

      @@sselmanalecsandra
      I just messaged you on Facebook...

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад

      @@anonymousgirl799 text me back on my fb,it doesn't seem to show them on time. Thank you.

    • @anonymousgirl799
      @anonymousgirl799 5 лет назад

      @@sselmanalecsandra
      How do I friend you? It says we "arent connected"?

  • @donnamoore8479
    @donnamoore8479 5 лет назад +2

    Thanks so much for one of the most honest description of having MS. I too have it. I use a wheelchair all the time. The fatigue and mobility issues can take a toll on my speech, swallowing, pain level and well being. You take care and know you are not alone. Love from the U.S.

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад

      May God bless you and support you. My heart goes out to each and everyone who replies here or is in pain wherever they might be. It's very important that we share our experiences so that we kinda have an idea of what is it to come on the way. Thank you

  • @lilpandanesegirl
    @lilpandanesegirl 3 года назад +1

    8 years strong on Tecfidera!!! ♡

  • @abq9203
    @abq9203 5 лет назад +2

    🙏 for all.

  • @voboe
    @voboe 5 лет назад +3

    Hi
    I am on TECF for almost 2 years
    My advice is to take it with a 1 avocado in your breakfast and dinner
    Fatty food ready help for flushing and stomach problems.
    I am taking 10000 UI vitamin D in winter and 500O in summer .
    I checked my levels last summer and they were still low in the normal range.
    I hope you feel better soon.

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад +1

      Thank you very much for your reply. Your evidence over the intake of vitamin D are very much appreciated. May God bless you. You can also text me on my fb page selman alexandra.

    • @voboe
      @voboe 5 лет назад +2

      I would be happy to share my experiences and what I have found to work for me so far.
      I will send you links to videos of people on RUclips that really helped me in this journey.
      We seem to learn more from people with MS then the doctors.
      Stay positive!

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад +1

      @@voboe Thank you

    • @enajenaj6841
      @enajenaj6841 5 лет назад +1

      You should try to get your vitamin D level checked. My MS neurologist recommends 4,000 IU per day. I was reading lately where somebody damaged their kidneys from taking to much vitamin D need to be careful. I have been on Tecfidera for 3 years now. My lymphocytes are getting a little low other than that I feel stable I am doing my blood work monthly to keep an eye on them

    • @voboe
      @voboe 5 лет назад

      @@enajenaj6841
      I am in the same situation.
      Lymphocytes are at 0.9
      It seems like soon it will be the end of Tecfedera.
      If you look at Coimbra protocol they have 200 000 UI of vitamin D
      In my MS magic book it says that it's very hard to bring your calcium to toxic levels so more monitoring levels is important

  • @momtazjee
    @momtazjee 5 лет назад +2

    it’s an every day battle certainly, 13 yrs i’ve had it , edds 1.5 to now 4.5 , stem cell treatment I think australia is doing phase 1 trials-God bless you as well!

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад

      Maybe we get more comments about the stem cells treatments. Thank you

  • @rodneypower9368
    @rodneypower9368 5 лет назад +2

    Thank you for your video. I also take Tecfidera and so far no new lesions. I feel like I’m getting worse though.

    • @sselmanalecsandra
      @sselmanalecsandra  5 лет назад +1

      Your comment is helpful as well, this is a common sensation, that we actually feel worse. Let's see what others will say. Thank you

  • @sweetgal11783
    @sweetgal11783 4 года назад +4

    I’m starting to wonder if the Tecfidera has been poison to me. I’ve felt worse and worse the longer I’ve been on this drug. I just had a relapse. New lesions on thoracic. I’m always so tired all the time. Legs are so tired. All the doctors wanna blame the ms but I’m convinced it’s the Tecfidera. One day I forgot a dose and felt better for a while. Waiting for insurance to approve Ocrevus

    • @sselmanalecsandra
      @sselmanalecsandra  4 года назад

      Thank you very much for your reply, it's very much appreciated and most of all very helpful for all of us. I find myself a lot in your story. Let me know how will you be doing on ocrevus. May God bless you and may you have a happy year.

    • @martinmatko6401
      @martinmatko6401 6 месяцев назад

      Keep in mind #BloodFlowMatters
      #CriticalHealthcare_Research
      Horizontal sleeping
      Who Knew??
      #BloodFlowMatters
      Supplying Oxygen and Nutrients to every Cell along with clearing toxic brain waste, what is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal flow, impacting neurological symptoms regulating mood and cognitive Senescene Psych issues? #CCSVI #BloodFlowMatters
      With age, blood flow to the brain decreases b/c blood vessels produce less nitric oxide, a gas that expands blood vessel walls. Such disruptions contribute to changes in cognitive function that occur with age. #Exercise increases nitric oxide & boosts blood flow to the brain.
      #Urgent #BloodFlowMatters
      Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI
      Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain, which after years results in MS
      Sleeping is a Silent threat to mankind!
      Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI
      Help facilitate Neurovascular Disease Research
      Best chance for longevity quality of life depends on availability Neurovascular Disease Research Collaboration.
      '“When we age, one of the common things that happens within our brain is that the blood vessels do become compromised in part because of chronic conditions,” it is said. “And when that occurs in normal aging, what happens within the brain is … silent strokes.”'
      As much CCSVI has been Scientifically established to have a role/part in 43 so Neurological afflictions including Dementia and so called MS
      'There is evidence to suggest COVID-19 impacts the same blood vessels that feed the brain. If the virus is damaging those vessels, which could speed up aging, this, in turn, means some survivors might be at risk of getting early-onset dementia.'
      Time for Learning Science #BloodFlowMatters
      Apparantly nothing else matters critical Healthcare So happens CCSVI a TREATABLE Congenital Science Confirmed Recognized Med Condition STUDIES show causative factor so called Multiple Sclerosis & role/part 43 other SO called Neurological Afflictions Incl. Migraines, Asperger Autism Dementia/Alzheimer's Aphasia Optic Neurtis Tinnitus Transverse Myelitis Ect! facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress!⁰⁰
      Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety
      #VascularDepressionConsensus
      FB Group: MultipleStenosisSociety
      t.co/7JNmFD7W4l
      Apparently What is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal Blood flow Impacting circulation and homeostasis balance? #CCSVI #BloodFlowMatters #spasticity #perfusion
      Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain
      CCSVI is Science Confirmed Recognized Medical Condition STUDIES show causative factor MS Varicose Veins Fatigue Atrophy Inflammatiion Thyroid issues Covid-19 Heart function matters Cramps Mental Health problems Bowel & Bladder affairs insomnia Senescene Psych unusual behavior!
      Studies have shown that mostly ineffective often harmful or poorly tolerated Pharmaceuticals that 'TREAT' so called Multiple Sclerosis (M$) $20-40Billion W/a B/yr industry!
      Living with the Symptoms of Multiple Sclerosis is torturous tortuous tumultuous utter misery!
      Chronic Cerebrospinal Venous Insufficiency CCSVI/Neurovascular Disease
      CCSVI is a Treatable Congenital Scientifically Confirmed Recognized Medical Condition, Established Causative Factor in Multiple Sclerosis SymptoMS, AND plays a part 43 other so called Neurological afflictions!
      CCSVI may be impacting yourself right now and you are unaware! #CCSVI
      Apparently the Sooner a Person Receives Venous Angioplasty for Treatment of CCSVI! best possibility eliminating cause of MS Symptoms and easing or disappearing!
      So Called Multiple Sclerosis is more important to some than others Pharmacists, The M$ Society, Neurologists 'so called MS experts', Cane Manufacturing, Scooter and Power Chairs companies, etc Etc ETC
      So Called Multiple Sclerosis (MS) is/HAS been a MYSTERIOUS elusive UNPROVEN Autoimmune THEORY solely based on SYMPTOMS!
      STUDIES show Pharmaceuticals That 'TREAT' so called MS only 20-40% Effective DO NOT slow Progression of the Disease Often have Harsh Corrosive Side Effects sometimes DEATH! #CCSVI
      So Called Multiple Sclerosis (MS) is/HAS been a RUBBISH UNPROVEN Autoimmune THEORY Based Solely on SYMPTOMS!
      #CCSVI
      Venous Hypertensiono
      >microbleedings
      >iron
      >free radicals
      >neurodegeneration
      #multiplesclerosis
      M.S. - Mystery Solved
      Mysterious Autoimmunity
      = CCSVI Hypertension
      M.S. - Mystery Solved
      Mysterious Autoimmunity
      = CCSVI Neurodegeneration
      Keep in mind!
      Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI
      So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!!
      Apparently sooner treatment best possiblity Symptoms easing or disappearing.
      1/1 #CriticalHealthcare_Research #CCSVI
      Neurogenesis is the process by which new neurons are formed in the brain. Neurogenesis is crucial when an embryo is developing, but also continues in certain brain regions after birth and throughout our lifespan.
      qbi.uq.edu.au › brain-basic
      Homeostasis is an internal feedback system that stabilizes and balances our body's chemistry, so that our organs work smoothly and efficiently with each other. Sickness is the disruption of homeostasis, which doctors treat with medicine.Oct 20, 2016
      www.bmj.com› bmj.i5643
      Blowing the Whistle on Corrupt Pharmaceutical Industry by Gwen Osen
      FB Group: MultipleStenosisSociety
      facebook.com/share/p/jQxWX5Ce6sZgzmky/?mibextid=oFDknk causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain, which after years results in MS
      Sleeping is a Silent threat to mankind!

  • @nicedc7582
    @nicedc7582 3 года назад +2

    I've had MS for 7 years already and was on Tecfidara. I just had a infusion of ocrevus which will bemy new treatment . I have lesions threw out my cervical spine and Brain lesions on frontal lobe and cerebellum. I have foot drop and have right side weakness . I wear diapers and use foot drop brace use quad cane. I have Cognitive problems it's been a nightmare.

  • @TheBrm75
    @TheBrm75 Год назад

    3 months on tecfidera and it's doing a good job

  • @brielleanyez7113
    @brielleanyez7113 4 года назад +1

    Hi sweetheart, I am almost in tears watching this. They just switched me to Tecfidera and I hate it. I am so tired, nauseated, pain, I'm just done. It just gets worse everyday 😔 what can we do??

  • @callmethreeone
    @callmethreeone 5 лет назад

    Thank you for sharing I am on Tecfidera also, do you have a Twitter? There are new studies on vitamin D

    • @sselmanalecsandra
      @sselmanalecsandra  4 года назад

      Thank you for your reply, for me Tecfidera is very hard. I don't have Twitter I only have Facebook selman alexandra. May God bless you.

  • @lisabarr4284
    @lisabarr4284 2 года назад

    My doctor is suggesting this and I’ve been very hesitant to try it. Now I know I won’t.

  • @mariannepelletier4742
    @mariannepelletier4742 10 месяцев назад

    Reading a lot about successes with plant based diet. Dr terry wahls, dr jelenic, dr saray stancic, all reversed their ms

  • @sonsofanarchy5316
    @sonsofanarchy5316 4 года назад

    Ți au scris englezii, Alexandra, vb și eu da mi e lene acu sa ma concentrez, e 9 seara,, ești ok, acum? Boala noastră sm merge la scadenta. Spre secundar progresiva, simt și eu asta cum ai zis tu, 5 ani de boala am, da nu știu, atunci am avut primele simptome, în 2014

  • @jasonc5289
    @jasonc5289 5 лет назад

    You should do HSCT.

    • @eh3611
      @eh3611 Год назад

      What is that?

    • @jasonc5289
      @jasonc5289 Год назад

      @@eh3611 Hematopoietic Stem Cell Transplant. You can't do that in the United States, but, "we" don't rank first in healthcare. "We" don't rank 5th in healthcare. I like the study from 2017 where "we" ranked 54th. It is so weird.

  • @fmckeon1595
    @fmckeon1595 5 лет назад

    Check out MS Hope, the Coimbra Protocol (michael cawley FB group) Overcoming Multiple Sclerosis book (free)...the ms meetup group on gmail....keep fighting stay strong.