Turtle Warriors
Turtle Warriors
  • Видео 98
  • Просмотров 9 832
Nerve Study for GBS/CIDP - Analyzing My Results
In this video I interpret the results of my Nerve Study where I was orignally diagnosed with GBS (Guillain-Barre Syndrome). I am not a medical professional, so you should always consult your neurologist about your study.
European Joint Task Force CIDP Guidelines - onlinelibrary.wiley.com/doi/full/10.1111/ene.14959
Просмотров: 256

Видео

CIDP Patient Challenges Grand Canyon's Rim to Rim | Never Give Up !!
Просмотров 8211 месяцев назад
In this video I discuss my recent Rim to Rim hike in the Grand Canyon and the CIDP condition I have. A positive attitude, and that never quit mentality can make all the difference in improvements in your condition.
The Power of Goals | CIDP Patient Challenges Half Dome
Просмотров 113Год назад
I've been a CIDP patient for 4 years. I was originally diagnosed with GBS, but was subsequently rediagnosed with CIDP after a bad relapse and nerve study. In this video I talk about the power of goals. I recently challenged my fear of heights and hiked half dome, even though I have permanent nerve damage in both legs. With a good treatment plan, exercise, and rest, CIDP is not unsurmountable.
Common Practices For Weaning Off IVIG & Research Study Results | 40% of Patients Stay Stable
Просмотров 198Год назад
In this video I discuss a recent research study where 30% of CIDP patients we're weaned off IVIG therapy stayed stable. I also discuss the various common methods for titrating off IVIG. Research Study Discussion - www.medpagetoday.com/resource-centers/advances-chronic-inflammatory-demyelinating-polyneuropathy/cipd-safe-withdraw-ivig/3811#
GBS & CIDP | Similarities and Differences Explained
Просмотров 733Год назад
In this video I talk about GBS and CIDP and why the diseases are both similar and different.
CIDP Patient Reveals Training Plan for Rim To Rim Hike at the Grand Canyon
Просмотров 66Год назад
My Name is Darrell. I was diagnosed with GBS in September of 2019 and rediagnosed with CIDP a year later. I've improved so much in the last few year and i've decided to training for the Grand Canyon's Infamous Rim to Rim Hike. In this video I discuss my training which includes hiking, strength training and strength training. Subscribe and follow me on my Journey.
GBS & CIDP Recovery - The Power of a Positive Attitude
Просмотров 164Год назад
In this video I discuss GBS & CIDP and how having a positive attitude can help with recovery.
Turtle Warrior - Takes on Grand Canyon's Rim to Rim Hike
Просмотров 30Год назад
In this video I talk about my upcoming Rim to Rim hike at the Grand Canyon.
GBS & CIDP | How To Avoid Treatment Delays
Просмотров 83Год назад
In this video I discuss some tactics for avoiding treatment delays which are often caused by expired prior authorizations, prescriptions, and nursing orders. I also discuss co-pay assistance programs.
Resources for GBS & CIDP Patients
Просмотров 162Год назад
In this video I discuss the various resources that are available to GBS & CIDP patients, their caregivers, and doctors. GBS|CIDP Foundation International - www.gbs-cidp.org/ Volunteer / Liaison Program - www.gbs-cidp.org/support/resources/connect-with-a-volunteer/ Ask The Experts -www.gbs-cidp.org/ask-the-experts/ Publications - www.gbs-cidp.org/support/foundation-publications/ Virtual Summit -...
How GBS or CIDP is Diagnosed
Просмотров 831Год назад
In this video I discuss some of the differences between GBS and CIDP and how the diseases are diagnosed. If your doctor suspects you have either disease, have been recently diagnosed, or are a caregiver of someone who has been diagnosed this video might provide some useful information.
Subcutaneous IG Infusion Preparation | GBS and CIDP Tips
Просмотров 400Год назад
In this video Julie discusses how she prepares for her Subcutaneous IG Infusion that she takes for her CIDP condition. She also compares and contrasts how she prepared for her IVIG infusions to her co-host Darrell's preparations.
GBS & CIDP IVIG Infusion Preparation
Просмотров 589Год назад
In this video I discuss the steps I take in preparing for my IVIG Infusion. It amounts to hydrating, taking premeds to fight off side affects, and warming the area where the catheter will be placed.
Fit After 50 | Chest, Shoulders, and Tri's - Determining Weight | Phase 2 - Week 1 - Workout #14
Просмотров 38Год назад
Fit After 50 | Chest, Shoulders, and Tri's - Determining Weight | Phase 2 - Week 1 - Workout #14
Calico Tanks Peak | First Hike With 52 Peak Club | Fit After 50
Просмотров 14Год назад
Calico Tanks Peak | First Hike With 52 Peak Club | Fit After 50
Training For My First Marathon | Week 1 | Fit After 50
Просмотров 20Год назад
Training For My First Marathon | Week 1 | Fit After 50
Time to Up The Weight | Fit After 50 | Phase 1 - Week 2 - Workout 4 - Monday
Просмотров 30Год назад
Time to Up The Weight | Fit After 50 | Phase 1 - Week 2 - Workout 4 - Monday
Rim To River Challenge | Grand Canyon's 17 Mile Bright Angel Trail
Просмотров 15Год назад
Rim To River Challenge | Grand Canyon's 17 Mile Bright Angel Trail
Fit After 50 | Phase 1 Introduction | Full Body Dumbbell Workout
Просмотров 1,5 тыс.Год назад
Fit After 50 | Phase 1 Introduction | Full Body Dumbbell Workout
#RIMTORIVER Challenge | Final Hike Before Bright Angel Trail at the Grand Canyon | Hope I'm Ready !!
Просмотров 1Год назад
#RIMTORIVER Challenge | Final Hike Before Bright Angel Trail at the Grand Canyon | Hope I'm Ready !!
Fit After 55 | Chest, Triceps, and Shoulders | Practice Workout
Просмотров 19Год назад
Fit After 55 | Chest, Triceps, and Shoulders | Practice Workout
Fit After 50 | First Phase | Test
Просмотров 23Год назад
Fit After 50 | First Phase | Test
Grand Canyon's Bright Angel Trail | Week 4 of Prep |.Me and Jake Hike 8 Miles at River Mountains
Просмотров 11Год назад
Grand Canyon's Bright Angel Trail | Week 4 of Prep |.Me and Jake Hike 8 Miles at River Mountains
Get Shredded Fitness Series Wrapup
Просмотров 4Год назад
Get Shredded Fitness Series Wrapup
PR for Pull Ups | 10 Minute Modified Pull Up Challenge | Final Week 12 of Workout Series
Просмотров 122 года назад
PR for Pull Ups | 10 Minute Modified Pull Up Challenge | Final Week 12 of Workout Series
Caught in Vegas Lightning Storm while taking long walk with Golden Retriever (Sandee)
Просмотров 32 года назад
Caught in Vegas Lightning Storm while taking long walk with Golden Retriever (Sandee)
PR for my Push Ups!! 10 Minute Modified Push Up Challenge | Final Week 12 of Workout Series
2 года назад
PR for my Push Ups!! 10 Minute Modified Push Up Challenge | Final Week 12 of Workout Series
Get Shredded 10 Minute Modified Squat Challenge | Final Week 12 of Workout Series
Просмотров 92 года назад
Get Shredded 10 Minute Modified Squat Challenge | Final Week 12 of Workout Series
Get Shredded Week 11 Progress Report
Просмотров 42 года назад
Get Shredded Week 11 Progress Report
10 Minute Modified Pull Up Challenge - Week 11
Просмотров 32 года назад
10 Minute Modified Pull Up Challenge - Week 11

Комментарии

  • @radesaul
    @radesaul Месяц назад

    I'm thinking about doing this. On the sales portion of their websites they keep showing actual books. Do you follow along with video on say a portal on their site or do they send you actual books. Looks to me on your TV its a portal ( I hope) thanks for any help you can offer. PS Good job on the video

    • @turtle.warriors
      @turtle.warriors Месяц назад

      Hey there!! Yeah, i'm not associated with the Fit After 50 website. This was just a thing I was doing to help others that are older like me. I got thru the first two phases before ending the program and refocusing my content on my CIDP condition.

  • @tedmccauley9319
    @tedmccauley9319 2 месяца назад

    How many trearments did you get bfore you started walking again?

    • @turtle.warriors
      @turtle.warriors 2 месяца назад

      It took about 4 months before I could start walking again. I started with a cane and then moved to walking unassisted. It was a bit of a long haul and I went to fast and ended up messing up my back in the process.

  • @johnstoroschuck6667
    @johnstoroschuck6667 2 месяца назад

    I AM LOCAL WHO IS THE DOCTOR THAT TESTED YOU AND SAID YOU HAVE CIDP?? I WOULD LIKE TO KNOW??? JOHN

  • @johnstoroschuck6667
    @johnstoroschuck6667 2 месяца назад

    GREAT INFO, JOHN

  • @susanjohnson9268
    @susanjohnson9268 3 месяца назад

    That’s for video I’m a cidp patient receiving treatment for past 18 months everything you said is definitely true very similar side effects

  • @darrylskylar8757
    @darrylskylar8757 3 месяца назад

    🙏💙

  • @tedmccauley9319
    @tedmccauley9319 4 месяца назад

    Does it improve your condition or hold it from worsening?

    • @turtle.warriors
      @turtle.warriors 4 месяца назад

      It does a bit of both. It keeps your immune system from attacking your nerves and allows your nerves to heal.

  • @elainerobertson1988
    @elainerobertson1988 9 месяцев назад

    Just waiting for these tests to be done for the first time. This has been really helpful.

    • @turtle.warriors
      @turtle.warriors 9 месяцев назад

      Good luck. Let me know how it goes.

  • @shravanbagbande5897
    @shravanbagbande5897 9 месяцев назад

    I cidp

  • @Bluebellcalifornia
    @Bluebellcalifornia 9 месяцев назад

    Thank you!!

  • @Respinalutube
    @Respinalutube 9 месяцев назад

    I will review further

  • @virtueisrelative
    @virtueisrelative 9 месяцев назад

    diagnosed with CIDP in 2021 after a 2 month hospital stay and misdiagnoses. getting the correct diagnosis was a game changer

    • @turtle.warriors
      @turtle.warriors 9 месяцев назад

      I know. I went to multiple ER's and still didn't get a diagnosis until I got to see a neurologist. I was lucky, as it only took me a few weeks. Good luck with your treatment.

  • @dappersapper8080
    @dappersapper8080 10 месяцев назад

    I had progressing CIDP for about a year. Test after test was performed until they finally hospitalized me for an IVIG loading dose. While I was in the hospital, I had a GBS attack which caused me to be intubated for 6 days. It’s been a couple years now and I still get IVIG every three weeks. It’s like a roller coaster of progressive numbness and recovery, every three weeks. My toes are completely paralyzed, but other than that, I’ve learned to live with it pretty well. Thanks for sharing.

    • @turtle.warriors
      @turtle.warriors 10 месяцев назад

      The toes and feet are the worst. It sucks that you're not stable with the IVIG dosing. Ideally ,the IVIG keeps you stable for the entire 3 weeks allowing the body to try and heal itself. I'd push for maybe more frequent IVIG - every 2 weeks vs every 3 weeks to try and get your symptoms to stabilize. Wishing you luck and recovery. This disease sucks so much.

  • @survivingthriving3131
    @survivingthriving3131 10 месяцев назад

    You're videos are inspiring.- needless to say after my diagnosis, I became depressed because I was very active and did jousting and horse archery and competed all around the United States. I haven't been able to ride a horse since may and i'm really hoping these IViG treatments will help me

    • @turtle.warriors
      @turtle.warriors 10 месяцев назад

      Thanks so much for watching and commenting. Yeah.. I was such a competive golfer and really can't play anymore. It really took a toll on me but i've accepted my new reality, and am just setting different goals. Good luck on your IVIG therapy. Without it.. I likely would have never walked again.. strange now to say that given I just walked 25 miles thru the Grand Canyon.

    • @survivingthriving3131
      @survivingthriving3131 10 месяцев назад

      @turtle.warriors life has been different but I am optimistic, especially after watching your journey.

  • @survivingthriving3131
    @survivingthriving3131 10 месяцев назад

    I was just recently diagnosed myself and will start my IViG treatments after Thanksgiving. I have tried grounding and that has actually worked to make me feel better and be able to walk better. Have you ever tried grounding? I bought one of those grounding maps now that it's cold and I sleep on it at night.

    • @turtle.warriors
      @turtle.warriors 10 месяцев назад

      I have never heard of grounding. Sounds a bit gimmicky.. but who knows. My IVIG therapy was delayed a week.. and already feeling it. Sucks.. Good luck in your recovery !! The IVIG can have some amazing results. Stick with it.. try and stay positive. One day at a time.

  • @austinado16
    @austinado16 11 месяцев назад

    Very inspirational Darrell! Congrats again on doing such a great job of training/fueling/equiping/hammering out a Rim2Rim!

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      Hey Todd.. thanks so much. You found my other channel !!

    • @austinado16
      @austinado16 11 месяцев назад

      @@turtle.warriors What you've accomplished through mindset, altered nutrition, training, and medical treatments, is very impressive Darrell!! As you know, I'm a huge believer and practitioner of all of it!! Great job my friend! Looking forward to seeing your future adventures... and also, RIP to your butt, training on a road bike. Oohf!! 😉

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      @@austinado16 Thanks Todd !! Need to do some research on the best training plan for cycling now.

    • @austinado16
      @austinado16 11 месяцев назад

      @@turtle.warriors Step 1: Stay off the roads and streets. Step 2: Enjoy mountain biking! LOL

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      @@austinado16 No roads and streets for me.. Just bike paths !! We have a really nice path that goes from Henderson, NV all the way to Boulder City, NV and loops around the lake. Literally like 50 miles of path. It's awesome.

  • @Kman1960
    @Kman1960 11 месяцев назад

    Thank you Darrel for sharing your inspiring story ! You help to give all us CIDP Turtles hope ❤

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      Thank You my friend. !! Hope you are doing well.

  • @Respinalutube
    @Respinalutube 11 месяцев назад

    My friend, your story is not just compelling, is similar in pathology as mine. For the past year and a half, I've followed you as part of my recovery.

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      Thanks so much. This is so gratifying to hear. It's the whole reason I make these videos. Thanks for your support and your continued recovery.

  • @cletiawilliams1436
    @cletiawilliams1436 11 месяцев назад

    💯 got diagnosed in 2019 2mos after having my baby. I was a a nursing assistant for 25 yrs before this. So I definitely went through the same thing depressed and why me.! My daughter keeps me going!

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      Thanks for watching. Hoping your recovery is going okay.

  • @cletiawilliams1436
    @cletiawilliams1436 11 месяцев назад

    💯 this just happened to me....Dr. took a leave of absence and didn't come back. had to wait 2mos to see another neurologist for a new script.

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      So terrible how our medical system works. Thanks for watching.

  • @motochimp1
    @motochimp1 11 месяцев назад

    I really appreciate you sharing your experience with CIDP. I’ve recently been diagnosed and am learning as much as I can and I find your approach comforting. I’m scheduled for my first IVIG treatment on Thursday and am a little nervous. You mentioned you’ve been feeling good the last 4 to 5 months, and mentioned supplements. If you don’t mind me asking, what supplements and do you feel it’s making an impact in your treatment. Thank you for any information you can share. John

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      Hey John, good luck with your treatment. I've been on so many supplements, but the biggest difference has been the recent addition of CBD Tincture. I use the 1200 mg from Primary Jane's. I mostly got it to help me relax a little at night, and hopefully also help with inflamation. I feel it's made a pretty big differnce with my condition. Good luck with everything. Thanks for watching !!

    • @rabbiyitzchaksviben-tzionl3203
      @rabbiyitzchaksviben-tzionl3203 6 месяцев назад

      My symptoms are extreme fatigue cognitive issues and full body parathesia can Ivig help me in very young

    • @rabbiyitzchaksviben-tzionl3203
      @rabbiyitzchaksviben-tzionl3203 6 месяцев назад

      I have no physical weakness with the parathesia but I can’t function

    • @rabbiyitzchaksviben-tzionl3203
      @rabbiyitzchaksviben-tzionl3203 6 месяцев назад

      Feels like neuropathy in my arms and legs but I’m not weak

  • @vickysongjnvickysongjn8881
    @vickysongjnvickysongjn8881 11 месяцев назад

    Just wondering how many of patients here developed the symptoms after the mRNA vax? And how long it took to experience symptoms after the vax?

    • @turtle.warriors
      @turtle.warriors 11 месяцев назад

      It would be interesting if a study was done for sure.

    • @vickysongjnvickysongjn8881
      @vickysongjnvickysongjn8881 11 месяцев назад

      @@turtle.warriors the problem is we may only see some sporadic case studies, any systemic analysis or meta analysis study without support from both big pharmaceutical companies and the government medical establishment guaranteed will not to be published, even if it can be published, downsizing the effect and euphemism will be needed--my experience from both research and medical fields. Government and establishment also shut us up for saying/asking…….I wish all the best for your recovery!❤️

  • @Kman1960
    @Kman1960 Год назад

    Thank you so much for sharing your inspirational story. Your encouragement of establishing goals is much needed for so many who’ve been diagnosed with CIDP. God Bless !

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks so much Keith. I hope your recovery is still going well. Doing Grand Canyon Rim2Rim in a month !! That will be epic. January.. i'll be trying to get off IVIG again. Hopefully.. this time i'm done with it !!

  • @adonnysanchez5672
    @adonnysanchez5672 Год назад

    Great encouragement and personal info/achievements. 👏👏👏

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks so much for watching and commenting. You got this !!

  • @elaineblaschke
    @elaineblaschke Год назад

    Thank you for the time and info. I have a granddaughter who was dx'd with CIDP. She just turned 5. Yjis is not an easy row to hoe for her. Thanks for the breakdown and explanation.

    • @turtle.warriors
      @turtle.warriors Год назад

      She's young. With proper treatment hopefully she will live a relatively normal life (other than the infusions). Hopefully it will also go into remission. I pray someday for a cure.

  • @holly-annemaksyhung
    @holly-annemaksyhung Год назад

    Thank you for your video. ❤

  • @Kman1960
    @Kman1960 Год назад

    Thank you Darrell for continuing to post these inspirational videos ! God Bless you and I wish you all the best with your training routine and most importantly your Rim to Rim Hike. Please continue to post your progress ! Thanks again my friend !

    • @turtle.warriors
      @turtle.warriors Год назад

      Hi Keith.. thanks for watching !! I'm so lucky that I recovered the way I did, and I just want to do whatever I can to give others hope. Hoping your treatment is going well. See you on the next one !!

  • @vinodep7209
    @vinodep7209 Год назад

    Do you feel tired and sick after Infusion. For me it’s 3rd day after infusion that I feel washed out

    • @turtle.warriors
      @turtle.warriors Год назад

      For me it's right afterwards. Probably a combination of the infusion plus the premeds. Usually the next morning i'm lots better. I'm pretty luck as I dont' get many side affects.

  • @patrickstacey2915
    @patrickstacey2915 Год назад

    Hi, I am a GBS sufferer from England. I was diagnosed in April 2021 - my GBS was a direct result of the Astra Zeneca Covid-19 vaccination. I understand what you went through and how you suffered, as I suffered too. I was in hospital 6 months, I was ventilated, caught pneumonia and eventually had to have a tracheostomy. Anyway, just thought I'd say 'hi' and would like to wish you good luck for the future 😁. Nice video by the way.

    • @turtle.warriors
      @turtle.warriors Год назад

      Hey Patrick!! Thanks for sharing. It's a tough road, but we're warrior. We got this !!

  • @mrsminnamorato
    @mrsminnamorato Год назад

    Thank you for this! ❤

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks so much. Thanks for watching !!

    • @mrsminnamorato
      @mrsminnamorato Год назад

      @@turtle.warriors Of course and I subscribed as well! I have 2 quick questions for you: 1. Do you think there is a correlation between EBV, GBS, and MS? 2. Also, is IVIG better/worse than SCIG? Thanks in advance!

    • @turtle.warriors
      @turtle.warriors Год назад

      @@mrsminnamorato As far as the first question. I didn't know what EBV, but looked it up. Any virus can potentially cause GBS. Thankfully GBS is rare. I believe the literature is unclear on what causes MS, but similarly to GBS, it's an autoimmune disease, so it also might be brought upon by a virus. It's not clear what causes CIDP. It's not clear it's always caused by a virus. In my case I was originally diagnosed with GBS because of the quick onset of symptoms and the fact that I had a really bad fever (virus), so the doctor put two and two together. But now it seems it's CIDP because it keeps coming back. I think it's relatively rare for a person to have GBS/CIDP and MS. Hope this helps?

    • @mrsminnamorato
      @mrsminnamorato Год назад

      @@turtle.warriors Yes!! This helps tremendously! I had an attack and after tests, it was deemed as idiopathic and then I was diagnosed with RRMS, but not before my thyroid went out-enter Graves’. I just found out from bloodwork that I may have been misdiagnosed as having strep throat exactly 10 years ago when it was mono thus the EBV bloodwork scaring the life out of me! Everything l’ve taken for MS has been a failure and perhaps because the wrong thing is being treated. The symptoms I experienced with that attack I thought I was going to die because of the pain, couldn’t walk, paresthesias, and neuropathy which I’m currently dealing with. Taking Cymbalta for the neuropathic pain which has helped enormously.

  • @Kman1960
    @Kman1960 Год назад

    Great information Darrel ! Are you still continuing to improve ? How long have you been on IVIG ?

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks for watching my friend. I'm stable. Good days and bad days. I did a crazy/stupid hike at the Grand Canyon 1.5 weeks ago. Really kicked my ass ruclips.net/video/wVekCFd_9b8/видео.html - My lower back is really bothering me (supposedly one of the side affects of IVIG), plus I really screwed it up when my gait changed because of the nerve damage in my legs. Today i've got a. lot of numbness and tingling in right foot and ankle. It's always one thing or another. But. hanging in there like usual. I've been on IVIG for a little over 3.5 years. Tried to get off of it a year ago.. but really bad weakness came right back at the 7th week. How are you doing?

  • @Kman1960
    @Kman1960 Год назад

    Hi Darrel, very informative video. Keep up the good fight. And yes, I too was questioning God when I was first diagnosed. Fast forward a couple of months and Tomorrow will be my 4th IVIG Treatment for CIDP. It seems to be working as my body is slowly healing. God Bless and keep up the Good Fight !

    • @turtle.warriors
      @turtle.warriors Год назад

      Hey Keith !! Thanks for watching. Slowly but surely, we'll get there. I'm hiking the grand canyon this week. So with preserverance and the right treatement and attitude, anything is possible !!

  • @JacquiTorres-i4l
    @JacquiTorres-i4l Год назад

    i am now being treated with IVIg infusions & recovering fairly quickly. thank you thank you for being brave & sharing your story…it certainly made me feel less alone 😊

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks for watching. I'm so glad you're recovering quickly. It took a while for me.. and now with CIDP.. I have a lot of up's and downs.. But I try and stay strong. Don't feel alone, there is lots of folks with this disease, and lots of facebook groups for support.

  • @JacquiTorres-i4l
    @JacquiTorres-i4l Год назад

    it got to the point to were i could not sleep. so after about two months without sleep, came the panic attacks along with the trips to the ER, where i felt like the dr felt like i was just trying to get drugs

    • @turtle.warriors
      @turtle.warriors Год назад

      Yeah.. I didn't sleep for 3 weeks. I was a mess. Had no idea what was happening to me, I was stressed, and everytime I got close to sleeping had these terrible hypnic jerks that would awaken me. The only thing that helped me was lunesta. I'm still on it. But I can sleep. I also had a history of panic attacks.. but hadn't had them for almost a decade.

  • @JacquiTorres-i4l
    @JacquiTorres-i4l Год назад

    omg !!! your story sounds like mine!!! i was diagnosed with cidp aug 17, 2022 while i was 8 months pregnant…so my initial symptoms were mistaken for severe but common pregnancy symptoms

  • @maureenreene7775
    @maureenreene7775 Год назад

    Hi thank you for your video. I am in the UK and have been suffering for a year with numbness throughput my body. I have been given a prediagnosis of cidp and referred to another hospital for formal diagnosis. I recently needed a lumbar puncture and was admitted to hospital after with extreme post lumbar headaches. This was followed by severe pain and spasming in my right foot. I was left in pain for 2 days and difficulty with walking . No medic or neurologist came near me. A neurologist 2 days later came and just prescribed pregabalin and physio. I only received the pregabalin and then never saw anyone else other than ordinary doctors. Who had no advice or addressed the painful spasming other than to give me quinine. I have now been discharged with the drugs and spasming which happens every 3-4mins. I'm still awaiting my next appointment with neurologist 🤷‍♀️

    • @turtle.warriors
      @turtle.warriors Год назад

      This is so awful. It sounds like maybe during the lumbar puncture they may have hit a nerve which is acting up and causing the spasms. Hang in there. Nerves do tend to heal themselves. I'm taking both Gabappentin and Cymbalta for nerve pain and they do help.

  • @scottcampbell5536
    @scottcampbell5536 Год назад

    How long do these infusions go on?

    • @turtle.warriors
      @turtle.warriors Год назад

      For most CIDP patients, it will be for the rest of their life. I tried to get off my infusions about 9 months ago, and my weakness and pain came back after about 6 weeks so had to get back on the infusions. They say patients should occasionally try to get off their treatment, but you have to be careful that you don't cause additional nerve damage when trying to wean off.

    • @scottcampbell5536
      @scottcampbell5536 Год назад

      @@turtle.warriors thanks for the info.

    • @darryl2154
      @darryl2154 Год назад

      @@turtle.warriors It can be a difficult balancing act for sure. During my 18 years with CIDP, I have had times (months or years) where I did not need IVIG. However, my care team found that a more regular schedule was better for maintaining my nerve conduction results, my strength, and keeping symptoms at bay. Currently I'm infused once every 6 weeks and so far that has seemed to strike a good balance for me.

  • @Kman1960
    @Kman1960 Год назад

    Darrel, thank you so very much for creating this RUclips Channel and Videos ! It’s extremely comforting to here both your story and your experiences with CIDP. Since your IVIG treatments began have you regained and/or noticed nerve repair and or regaining feeling in your lower legs, feet and toes ? My initial 4 day IVIG infusion was 3 weeks ago and I’m scheduled for my second round of Infusion tomorrow. I’m already feeling periodic relief in my symptoms. Honestly, I’m just thankful to still be walking and able to still go to the gym. The Neurologist that diagnosed me said I’ve had CIDP for several years. Apparently my CIDP would flare up and then go into remission for months at a time. I hope and pray you continue to progress and do well !

    • @turtle.warriors
      @turtle.warriors Год назад

      Hi Keith. Thanks so much for watching and commenting. The IVIG for me was a godsend. My situation was weird, as I had a combination of acute onset, plus I just kept getting worse and worse. At about 9 weeks into my symptoms is when I finally got IVIG, and I could feel a difference almost immediately. But it was a long haul to wear i could walk again without assistance. Now, i'm at the point where most people that see me would not thing anything is wrong. The only thing I can't do anymore, that I used to is play golf. That's because of my back issues, which I only started having after my symptoms began. Anyhow, i'm glad you got diagnosed and are getting treatment. Be thankful that you have a good neurologist, and how that you are getting treatment, the sky is the limit. I have nerve damage, but I continue to improve slowly but surely.

    • @Kman1960
      @Kman1960 Год назад

      @@turtle.warriors your positive attitude is motivating and your progress in healing is inspiring. Sorry to hear you having to give up Golf but based on what I’ve seen from you I have now doubt that you’ll be back on the Golf Course someday soon. As the old timers say “God willing and the Creek don’t rise” 💪🏼.

  • @Kman1960
    @Kman1960 Год назад

    Looks like your staying in shape. I had my first initial IVIG infusion 3 weeks ago. Going in for my 3 week follow up infusion on Monday. God Bless, it’s great to see a success story. God Bless !

    • @turtle.warriors
      @turtle.warriors Год назад

      Hey Keith, good luck with the infusions. It made such a difference for me. Be patient and hang in their buddy.

  • @leighjames6066
    @leighjames6066 Год назад

    Thank you Darrell. Very informative. My experience mirrors yours to a point, but also differs in quite a big way. Firstly, my diagnosis is CIDP. First major symptoms started early Feb 2022 (legs pretty much stopped working). Local General Practice Doctors didn't have a clue and assumed that I might have a back problem. I saw an Osteopath and also a sports masseur for the next three months and, whilst they certainly helped me, it was never going to be a cure (which we didn't know at the time). My health rapidly deteriorated in May, to the point where I couldn't walk at all and was falling over. I was admitted in hospital on May 30th and was diagnosed with CIDP within a couple of days. I was to spend 5 of the following weeks in hospital (three separate stays). I had all of tests that you mention in the video, plus a great deal more - brain scan, heart scan, kidney biopsy. However, it was the lumbar puncture and specialised blood tests that really threw light on the situation. By 4th June I was totally paralysed. Then the miracles started happening :) First treatment was IVIG. My response was pretty miraculous - within two days of the infusion my body had returned to pre-condition health. I was able to walk unaided and, apart from quite a bit of muscle atrophy, I had almost all mobility back. Then came the downside..... the benefits from IVIG only lasted 5/6 days, at which point I returned back to paralysis (and had to enter hospital again). This happened three times. By the 3rd time, the special blood tests had come back showing that I had an extremely rare variant, with only 5 prior known cases. Luckily for me, there was a different treatment which has been a further miracle. So, on the 3rd time, I was again given IVIG (that means that I had had three doses in 4 weeks! which the doctors were a bit concerned about giving me so much....) which picked me up to pre-condition health. They then supported that level through high-dose steroids (60mg per day) gradually tapered off over 6 months. And, finally, the special stuff - I was given an infusion of Rituximab. This stops my body from producing the errant proteins that causes the CIDP by lowering my immune system. It works fantastically well. I haven't had any further IVIG infusions since then. Steroids have now finished. And, fingers crossed, my immune system should come back online in July/August - they think without the initial problem. I realise that I've been extremely fortunate with my recovery. It was not fun, at all, going through to paralysis (pain was really intense, too) but to be returned to pre-condition health has been just amazing. I set myself a challenge that from November 1st to April 30th I would complete 2600 miles on my spin bike, so as to help regain some of the muscle strength that I lost. I'm currently at 1950 miles! :)

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks for sharing.. Such an awesome story of recovery. They do say that one nice thing about steroids vs ivig.. is sometimes steroids work better for being able to get off of them without a relapse. My goal is for next Fall to do the Grand Canyon Rim to Rim hike in one day. Likelyi will do that in the early October timeframe. In april I will again to the rim to river hike. Keep it up !! Thanks so much for watching !!

  • @darryl2154
    @darryl2154 Год назад

    Hi Darrell, I stumbled across your video. This is a very good description of the typical diagnostic process. (For me, nearly 19 years ago.) "Be your own best advocate" is great advice to anyone in the middle of these diagnostics. Not long after my nerve conduction test and a spinal tap, I could feel my walking was getting worse. I was able to get my neurologist on the phone and she said "OK, I've seen enough, I'm bringing you in for IVIG." My positive response to IVIG left no doubt that it was CIDP.

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks so much for watching and your comment. The best advocate advice is really what it's all about. By the way.. you spell your name wrong !!

  • @happytilton
    @happytilton Год назад

    I had a similar Dx as yours. Symptoms 1st started in Feb 2020, and progressively worsened until last week on May, where it excellerated from unassisted walking to paralyzed in a matter of 5days. Dx'ed GBS Jun 2020, but 6wks later, I was paralyzed again. Dx was then changed to CIDP. I now receive regular infusions of IG, 1g/Kg/21days. In fact, I get an infusion at 8:30a, Tuesday.

    • @turtle.warriors
      @turtle.warriors Год назад

      I hope you're doing better with the regular infusions. It's amazing how getting IVIG / Steroids / or PE postively affects our quality of life. I do wish more research could be done to better figure out what is causing our immune system to go crazy. Probably something really simple.. we can hope that someday they can figure this stupid disease out and we can all be cured.

  • @Marinthees
    @Marinthees Год назад

    Thanks for this information, appreciate the knowledge and your positive attitude big time!!

    • @turtle.warriors
      @turtle.warriors Год назад

      Thanks so much. Lots more content to come. This disease is so strange. I'm fascinated by how much the weather affects me. The cold is the worst.

  • @Marinthees
    @Marinthees Год назад

    Thanks for the informative content, your channel is inspiring me with my struggle through nerve pain

    • @turtle.warriors
      @turtle.warriors Год назад

      You got this! It's a tough road, but we're warriors! Thanks for the comment and the subscribe. Lots more comment coming. If you have any ideas on the type of comment you'd like to see, let us know !!

  • @Marinthees
    @Marinthees Год назад

    Great video!!

    • @turtle.warriors
      @turtle.warriors Год назад

      Glad you enjoyed it. NIcole (my wife) stopped her training, and is putting her marathon back a year. Hopefully in 8 months or so (after she retires) she'll start this journey again !!

  • @patrykklek6251
    @patrykklek6251 Год назад

    Hello from Poland, im cidp fighter

    • @turtle.warriors
      @turtle.warriors Год назад

      Hi Patryk !! Nice to meet you !! We'll have lots more content coming. Hope you keep watching. Thanks.

    • @patrykklek6251
      @patrykklek6251 Год назад

      How are you doing with cidp fghter ? Are you working, What sympthons do you have, pain?

    • @turtle.warriors
      @turtle.warriors Год назад

      @@patrykklek6251 I'm fortunate as the disease primarily progressed only to my legs. For the most part, i'm almost fully functional but do have nerve damage in both legs, so my gait is a little funny. There are some things that I can't do anymore, as I was a avid golfer and i'm not able to do that anymore. I still sometimes have a lot of tingling and numbness in my legs.. primariy feet, ankles and calves. But it sort of comes and goes. I tried to get off IVIG last year, but the symptoms came back after about 6 weeks, so had to get back on it again. I may try again after the summer. I want to beat this stupid disease.

  • @Kman1960
    @Kman1960 Год назад

    How long did you have CIDP before getting treatment thru IVIG ?

    • @turtle.warriors
      @turtle.warriors Год назад

      I was originally diagnosed GBS, because condition was more acute. I was diagnosed in 9/19 and it took about 7 weeks for me to get IVIG. In that 7 weeks I deteriorated quite a bit. If I we're to go thru it again.. i'd sit myself in a hospital and have neurologist see me and get IVIG treatment right away. Would have saved a lot of the nerve damage I have.

    • @terryb3580
      @terryb3580 9 месяцев назад

      How long after ivig did symptoms start improving. I am 4 days out from a 5 day infusion and i am weak,extreme fatigue,muscle joint pain especially in both thighs and arms

    • @darrylskylar8757
      @darrylskylar8757 3 месяца назад

      @@terryb3580🙏💙

  • @matthewmiller5133
    @matthewmiller5133 Год назад

    I just got this diagnosis last week and I'm trying to learn about it. Thanks for doing the video!

    • @turtle.warriors
      @turtle.warriors Год назад

      It's a rough go. I had a very interesting case. Mine was acute and primarily motor. Listen to your doctor.. but always advocate for yourself. Learn as much as you can. Take supplements, get rest, try not to stress. You got this. You can heal!!

    • @turtle.warriors
      @turtle.warriors Год назад

      There is also really good facebook groups on both GBS/CIDP and CIDP. I'd recommend joining them. Very supportive and informational.

    • @turtle.warriors
      @turtle.warriors Год назад

      There is also a GBS/CIDP foundation 0 www.gbs-cidp.org/ - with tons of into and local liasions. Very helpful.

  • @Threedog1963
    @Threedog1963 Год назад

    Just starting out with this plan. You plan on doing more of these videos?

    • @turtle.warriors
      @turtle.warriors Год назад

      I was just testing the livestream and he workout. Starting Phase 1 of these workouts on Monday.

  • @lincolncarter4224
    @lincolncarter4224 2 года назад

    Keep it up king 👑

    • @turtle.warriors
      @turtle.warriors 2 года назад

      Thanks Mr. Carter. This was my last workout for this series. Switching it up a lot. Going to focus on the over 50 crowd. Hopefully the channel will do a little better.