Living with Neuromyelitis Optical Spectrum Disorder (NMOSD)

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  • เผยแพร่เมื่อ 8 ต.ค. 2024
  • Meet Deshon Williams, a Wonderful Patient from our Infusion Center in Canton Georgia

ความคิดเห็น • 53

  • @LimaBravoLB
    @LimaBravoLB ปีที่แล้ว +10

    I met Deshon at his workplace. His determination is nothing short of amazing. He is an extraordinary young man, with an tremendous personality. He made my day a better day. Be strong Deshon…may God bless you in your battle with this illness.

  • @tamaraheilpern8757
    @tamaraheilpern8757 ปีที่แล้ว +8

    I had the honor of meeting Deshon today with my granddaughter. He was so very helpful and genuinely wanted to help me find what I was looking for. He shared his incredible story and that it was on TH-cam. I told him that he is one special man and that his Heavenly Father needs him to be here to share his story. He hugged me twice and we gave one another high fives a few times, I told him that I would see him again. The Spirit was so strong when I was talking with him, I was meant to meet Deshon today! What a wonderful day….on the Sabbath❤️❤️❤️❤️❤️

  • @jackiecollins9768
    @jackiecollins9768 ปีที่แล้ว +9

    As I sit here and watch your video tears run down my face and it’s because I know of everything you’ve gone through because two years ago my daughter was diagnosed with NMO and everything you experienced she has experience it, she lost her vision in her left eye first then her right eye, there is so much to say but I will just sum it up with God is faithful she doesn’t have the pain in her body anymore and she’s able to walk now but she hasn’t regained her vision yet but I know that there’s nothing too big for God and with him all things are possible he’s faithful to his promises.. be and stay encouraged and know that God is a healer and he will never fail you .. God Bless You

    • @msssss9115
      @msssss9115 5 หลายเดือนก่อน

      May I ask if your daughter had received a Covid vaccine? I developed this immediately after.

    • @msssss9115
      @msssss9115 5 หลายเดือนก่อน

      I want to say, that I’m not against vaccinations, my body just apparently just doesn’t like them.

    • @alicelearn1346
      @alicelearn1346 5 หลายเดือนก่อน

      How are you feeling now @mssssss9115? Did you get it recently?

  • @Shotbyxclusive
    @Shotbyxclusive 4 วันที่ผ่านมา +1

    It’s hard I woke up randomly parylzd from the neck down 4 kids I was In icu for 6 months for me to start walking and using my hands again I lost everything my hands don’t open all the way and my whole body feels numb. This thing is so hard painful I cry everyday I hate it always have to find To keep my mind busy

  • @marcusxavier4436
    @marcusxavier4436 ปีที่แล้ว +6

    To every doctor and scientist ty... yall saved my life

  • @michaelteasley6861
    @michaelteasley6861 ปีที่แล้ว +4

    I was Blessed today while shopping at Lowes! Meeting Dashon was a n awesome Blessing and the sharing of his testimony just made my day. He went above and beyond while helping me and I really appreciate it!
    Lowes aught to be commended because while he was helping me one of his coworkers Terry had came out just to check on him. That Blessed me to see the love and concern for one another! TGBTG!!!

  • @juliesimmons9122
    @juliesimmons9122 ปีที่แล้ว +5

    Great testimonial, you are an inspiration to so many others facing this debilitating disease. God bless you.

  • @janeattaway9315
    @janeattaway9315 ปีที่แล้ว +3

    Desmond it was very nice meeting you at Lowe’s Sunday. You are a very nice young man. It’s a incredible story, glad your getting the help you need. Your in our prayers 🙏

  • @AndreiFantastic
    @AndreiFantastic ปีที่แล้ว +3

    Wow so many people saying all wonderful things about this young man ❤ hoping he heals and can live a healthy life ❤

  • @boopsy44
    @boopsy44 ปีที่แล้ว +4

    Deshon is an inspiring young man with a heart of gold. Thanks to all who put the work in to help him. He’s a hard working young man who keeps fighting. I met him at Lowe’s in Cartersville. I see him in there all of the time, in the garden section. He is always positive, helpful and cheerful. It’s a pleasure to see him in there. On a slow day he told me his story and it lead me to this video. My heart goes out to him and all who have to deal with this. God bless and keep him.

  • @ericstonsloan7671
    @ericstonsloan7671 ปีที่แล้ว +4

    Thanks for sharing your story with me today Deshon trust and believe in our merciful God to bless you plentifully through your journey 🙏🏾 PEACE ✌🏽 My Brother.

  • @ziatc
    @ziatc ปีที่แล้ว +3

    God bless you 🙏🙏 I’m happy you got a diagnosis and hopefully it will help you to live a bit better. ❤

  • @birthebeamernildcurtis7342
    @birthebeamernildcurtis7342 ปีที่แล้ว +3

    Deshon, thank you for sharing your story with me, I am so glad to see that you have such a beautiful group of caring and supportive people and great healthcare team members. I can truly see how far you have come! Thank you so much for your help today! I admire your spirit, and your great customer service! Bea

    • @deshonwilli93
      @deshonwilli93 ปีที่แล้ว

      You're very very welcome Bea it's been a very tough road and experience I have ever encountered. 😢❤ I really definitely want to help a lot of people as best as I can, that is exactly why I have decided to go PBS. 🥹

  • @hym8nc1
    @hym8nc1 ปีที่แล้ว +3

    Thank you for sharing your story I to have NMO. I am moderately paralyzed from the waist down. I was First diagnosed with transverse meylitis then a year later NMO, a struggle of 6year now. I like to say 3 years of decline & 3 years of positive progression. My story is to long to go into, but trust me i am muuuuuch better from where I started. Your video is motivation to me, to get up and work that much harder to continue to eat healthy, workout, & to stay Address to new technologies. I am sure there will be a cure one day. Again thank you for sharing.
    For those that my want to know my treatment.
    ( keep in mind these Doses were higher at 1 point in time. But giving the positive progression have been lowered. And this is where I today.
    Rituximab treatment- 3times a year 2 in June 1 in Dec.
    Mycophenolate 500mg every other day.
    Baclofen 20 mg 3 times a day
    I was on Prednisone for about 2yrs. But given my progression was able to come off it a year ago!
    To all that are fighting this disease dont give up. I know the mental battle can be harder then the physical at times. I pray for your progression, peace and strength ❤ Jermaine Smith

  • @ricardodeleon670
    @ricardodeleon670 ปีที่แล้ว +4

    I was diagnosed today 10/4/23 with NMO. So many questions, I am terrified.

    • @deshonwilli93
      @deshonwilli93 ปีที่แล้ว

      Oh no, I'm very sorry to hear that... Did you go to the hospital and thought you was going through a pinched nerve? Because my reasoning of asking because the exact same thing happened to me... 😢😮💔😞

    • @JG-ix5xr
      @JG-ix5xr 10 หลายเดือนก่อน +4

      So sorry to hear, my husband was very I’ll with NMO/MS - we use Dr Wahls protocol for autoimmune conditions and he has improved still fatigued no numbness and vision is better! Best to you!!

  • @Majumdar97
    @Majumdar97 ปีที่แล้ว +3

    My mother is also a patient of NMO, suffering from 2013

    • @deshonwilli93
      @deshonwilli93 ปีที่แล้ว +2

      Oh no, that is so terrifying one of the things I hate the most is someone who is suffering I am so definitely I'm going to pray for your mother and she gets the kind of treatment she needs in Jesus name I pray Amen 🙏🏽❤️🥹💐

    • @vaishakhchanganath6910
      @vaishakhchanganath6910 6 หลายเดือนก่อน

      ​@@deshonwilli93hi darshon am vaishakh from India. I need to talk to you. Am also a patient of NMO. May I get your WhatsApp no, or Instagram Id.
      Friend, I really really want to talk to you

    • @Matlock715
      @Matlock715 4 หลายเดือนก่อน

      Suffering since 2020 very uncomfortable disease

  • @annahLadams
    @annahLadams ปีที่แล้ว +8

    I'd love to know the treatment. I fell sick around August 2021 by November 2021 I was completely disabled. Diagnosed with nmosd in February 2022. But I am seronegative. I've been on Ocrevus q6 month infusions and 3-5 day solumedrol infusions for flares. I'm not getting better. Only worse and I'm missing out of my entire life. They want to try Acfhar self injections now. Other than that I just feel and know I'm a goner. This is a horrible disease. I'd never wish it on anyone for even a 5 minute walk in my shoes.

    • @deshonwilli93
      @deshonwilli93 ปีที่แล้ว +7

      I'm so deeply terribly sorry about your diagnosis... Yeah I must say, it's not fun at all it just makes you feel very defeated and out of place .... I am so going to pray for you and really hope you get the kind of treatment you truly need and deserve. 🛐💐😇

    • @annahLadams
      @annahLadams ปีที่แล้ว +2

      @@deshonwilli93 thank you.

    • @deshonwilli93
      @deshonwilli93 ปีที่แล้ว +3

      @@annahLadams you're so very welcome, I know things can be kind of tough right now thus far because I'm currently kind of dealing with my diagnosis myself, so I know exactly the feeling I really pray for us to find our best recovery possible 🛐💐😇

    • @sherrytratum3362
      @sherrytratum3362 ปีที่แล้ว +3

      May the Lord heal you completely from head to toe Deshon. U are sooooo very very special. I’m thankful I met you.

    • @paigeleffew3535
      @paigeleffew3535 ปีที่แล้ว +3

      Deshon & Anna you’re both in my prayers💕 Deshon, it was such a pleasure to meet you. You’re such a beautiful, courageous soul! You’re a light, so full of positivity. You truly blessed me today with your sweet spirit. Thank you for helping me today, you truly amaze me!
      For you: Jeremiah 29:11
      For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
      Paige

  • @ShadayneMorris
    @ShadayneMorris ปีที่แล้ว +4

    I am in Jamaica and really need this help

  • @ingridoneal466
    @ingridoneal466 3 หลายเดือนก่อน +1

    I have MS which is different. I am on Kesimpta. What treatment is he on? Just wondered.

  • @depanbelakang1574
    @depanbelakang1574 ปีที่แล้ว +1

    hello, im from Indonesia and i have had NMOSD since 2018.

  • @mauricetyrone6731
    @mauricetyrone6731 11 หลายเดือนก่อน +2

    I was diagnosed with NMO in 2016 I had just graduated highschool

  • @lindadean8702
    @lindadean8702 ปีที่แล้ว +2

    My friend Deshon

  • @melchieempiales5749
    @melchieempiales5749 ปีที่แล้ว +2

    Did Somebody here experience Itchiness around the body?is that a symptoms of NmOSD?

  • @eleiraandes1766
    @eleiraandes1766 11 หลายเดือนก่อน +1

    I was diagnosed last year,one of my eye get blind.

    • @deshonwilli93
      @deshonwilli93 11 หลายเดือนก่อน

      Oh no, I'm so terribly sorry to hear that God bless you, I'm pretty sure you felt very defeated and down God will always help you through this very tough journey because I felt exactly the way too.I completely understand exactly how you're feeling right now... like defeated, out of place, and helpless. 🛐😞💔 I really hope and pray you get the type of treatment and help you truly deserve. 🥹😊🙏🏽

  • @melchieempiales5749
    @melchieempiales5749 7 หลายเดือนก่อน

    Who's taking up steriod for long-term medications? Do you stop taking it at 5mg?

  • @martinsahagunsiles3513
    @martinsahagunsiles3513 17 วันที่ผ่านมา

    Hero

  • @brucewayne4849
    @brucewayne4849 ปีที่แล้ว +2

    Does steroid and immunosuppressants prevent acute attack

    • @DreamingDarlin
      @DreamingDarlin ปีที่แล้ว +2

      Yes, especially newer drugs made explicitly for NMOSD. I have soliris infusions every two weeks and that's the only medication I'm on now because of the soliris working so well. I got off steroids, baclofen, and some other meds. It was slow to work, felt better after six months, and each month after that I felt better and better. Symptoms faded, although I still have a bit of MS hug some days and skin sensitivity on only one arm now, and sometimes my stomach. I walk a little wobbly briefly after sitting for a while but then I'm steady.
      It's a hard journey but the Soliris really helped me to get back to as normal as I can be, no spasms/seizures, electric shocks going up my leg, no numbness etc. I always thank God, the VA hospitals, and everyone who helped me in my nightmare. I hope you can get the immunosuppressant that will work for you.

    • @melchieempiales5749
      @melchieempiales5749 ปีที่แล้ว +1

      @@DreamingDarlin what is soliris?
      I was diagnose with NMOSD too about 1 week ago they gave me 5 steriods shots and now i feel better and better everyday although the numbness still there . Also i want to ask did u ever feel itch around your body?

    • @hemarambarupal9015
      @hemarambarupal9015 11 หลายเดือนก่อน

      @@melchieempiales5749 how are you now? My sister diagnosed nmo. She is on steroids and inj rituximab 1 month ago. What about ur progression of disease.?

    • @Matlock715
      @Matlock715 4 หลายเดือนก่อน

      @@melchieempiales5749Yes itching comes from the nerve damage which is what I was told it can be irritating I feel at times I’m about to scratch my skin off.