How did my CIDP start?
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- Опубліковано 27 гру 2021
- Nearly paralyzed to hopeful recovery! My CIDP story so far, as told as awkwardly as possible. Last November i was diagnosed with an autoimmune disease CIDP, which made my body so weak that I was unable to continue to skate and eventually even walk. I wanted to share a short version of my story with you all.
This channel is to document my daily routine and progress toward a full recovery back Into skauing again from this rare autoimmune disorder. Lets beat CIDP, lets kick it to the curb! Oh, I will be uploading daily updates, see you tomorrow 😊
If you have recently been diagnosed with CIDP or GBS, please know you’re not alone. My goal is to show life after diagnosis, the path there, and hope. I’d love to hear your story and help anyway possible, don’t hesistate to reach out ❤️
Oh my goodness yes, your description of "banana peel falls" !
My experience too, so very similar, from charging an active, thriving life to "walking on memory", a disconnection to my prior groundedness, falling on nothing and my life as I knew it was slipping away..... Recent diagnosis and infusions IVIG beginning this coming week.
I appreciate your sharing, your story is validating as my 3 year journey has gone unheard and gaslit by my small town Docs, etc. I found a brilliant specialist at a large medical University that recently "heard" and validated my odd and difficult journey and he stirred me in the direction of capable and highly experienced care.
Thank you for taking your time, as you are very relatable as far as lifestyle and your swift onset, etc. I've been diving in deep trying to learn as much as possible, reading research studies, listening to lectures and a few personal CIPD stories and a few today July 4th/Independence Day as for the first time - not feeling very independent......
Your experience is encouraging and may we continue to ripple out to others along the way....
You've been encouraging for me and I wish to you the very best in your healing and your future.
Tara
Your Story sounds very similar to mine. Hang In There Brother. I was diagnosed with CIDP a few years ago now I know it effects different people in different way’s differently. IVIG has worked wonders for me to the extent I have been able to do an Everest Base Camp Trek, Top out on Kilimanjaro & Last year I managed to Climb Mount Matterhorn. Give it time, do what you can, when you can if you feel like you can. It’s a long journey but it’s possible for some people to get there. I wish you the best of luck on your journey.
I was just diagnosed 4 months ago with CIDP it's definitely a life changing thing just had my 3rd IVIG beginning of this month and I had to go to a inpatient physical therapy rehabilitation 3 times already it can be scary at times dealing with this
I was diagnosed with CIDP early 2018...some days are bad and some days are good. One step at a time and you'll get there.
I was diagnosed with CIDP back in 2007. Ive learned a lot since then and am living an almost normal life again. A few tips to help anyone dealing with this disease:
A keto style diet works best for me. Lots of organic healthy meats, veggies and fruits. I tried a vegan diet but it made it worse. A diet of good fatty meats, eggs and avocados is good because it helps to regrow the myelin sheets that was stripped off the nerve endings by the immune system. Cut out all processed food especially sweet foods. Sugar is your number one enemy. It’s best to avoid all forms of sugar even stevia etc. you may can get away with a “little” manuka honey. Avoid smoking and drinking any alcohol, including wine. Exercise as much as possible and lift heavy weights (at least what is heavy to you). This will keep you stronger than the disease itself. Workout your entire body especially legs and arms. This is how I regained my balance. Get plenty of rest. When showering. Switch from hot to cold to stimulate your nerves, ending your shower with cold. Get a vibrating foot massager to stimulate your nerve endings in your feet. By doing all of these things I am 90% back to normal without taking any steroids or ivig, haven’t been back to my neurologist in ten years after he told me I will be wheelchair bound if I stopped the treatment. I’m not advising you stop treatment I’m just saying that’s what I did. I didn’t abruptly stop, I slowly reduced the amount of steroids I was taking and weaned myself off of them as I was doing everything I wrote in the comment. The stronger I got the more I weaned myself off. Hope this helps someone
Ich weiß zwar noch nicht, was ich habe, aber vielen Dank für deine Erfahrungen ! Alles Gute weiterhin !
I have this. It’s a life changing disease. I was actually in icu this summer and nearly died. Thanks for sharing your story.
Mine started with 3 tick borne diseases in 2019. Over the following 4 years all my symptoms resolved except Lyme Neuropathy. I stopped taking antibiotics and my neuropathy worsened. Thank god I found a doctor who specializes in this field. I was quickly diagnosed with CIDP. The first test he ran was for COVID antibodies; despite not having either COVID or a vaccine in 9 months my antibodies were through the roof. I am now part of a study of people who got Long COVID who then developed CIDP. I’ve received 12 weeks IVIG infusions and am much better but it’s a bit of a roller coaster.
What is your Dr.s Name and where it he located please.
Good luck with your recovery and journey! I was diagnosed January 2024 after a few years of living with the progressing symptoms. I did not have insurance and could not afford the bills. I too have problems walking “floppy feet” and my dexterity is horrible can not write and barley cook. I have suffered from severe psoriatic arthritis and skin disease which I think started CIDP in myself. I am looking for any opinions in getting in disability. Shoot me a message when you can! God speed!
Your doing great and your outlook and attitude is great. Great progress so far!
Awesome .
So proud of you .
Plan on watching you and praying for you .
Hey there. I was just diagnosed with CIDP a month ago. I’m really looking for friends to talk to and help me stay positive since the recovery seems like it’s going to be long. Just hearing your story is really helpful. Thanks for posting this.
I was diagnosed with CIDP back in 2007. Ive learned a lot since then and am living an almost normal life again. A few tips to help anyone dealing with this disease:
A keto style diet works best for me. Lots of organic healthy meats, veggies and fruits. I tried a vegan diet but it made it worse. A diet of good fatty meats, eggs and avocados is good because it helps to regrow the myelin sheets that was stripped off the nerve endings by the immune system. Cut out all processed food especially sweet foods. Sugar is your number one enemy. It’s best to avoid all forms of sugar even stevia etc. you may can get away with a “little” manuka honey. Avoid smoking and drinking any alcohol, including wine. Exercise as much as possible and lift heavy weights (at least what is heavy to you). This will keep you stronger than the disease itself. Workout your entire body especially legs and arms. This is how I regained my balance. Get plenty of rest. When showering. Switch from hot to cold to stimulate your nerves, ending your shower with cold. Get a vibrating foot massager to stimulate your nerve endings in your feet. By doing all of these things I am 90% back to normal without taking any steroids or ivig, haven’t been back to my neurologist in ten years after he told me I will be wheelchair bound if I stopped the treatment. I’m not advising you stop treatment I’m just saying that’s what I did. I didn’t abruptly stop, I slowly reduced the amount of steroids I was taking and weaned myself off of them as I was doing everything I wrote in the comment. The stronger I got the more I weaned myself off. Hope this helps someone
Thank you for sharing your story . Good luck on your journey to recovery.❤🙏🙏🙏 Prayers for you my friend.
Just seen your video and it was incredible to here your story. I was just diagnosed 6 months ago but have been living with this for 7 years differnt dr. And you know the story. So now i been on iv ig for 5 months and just went off it is a month now and it just started to do something so im looking forward to here from you on you progress snd i will let you know mine good job.
Keep up the good work. I too experience your symptoms. Would enjoy hearing any further experiences you may have.
I have been through two bouts of GBS, both caused by cold viruses. First case, I avoided the ventilator, barely, but spent two months in a wheelchair. Second bout was much worse, 43 days on a ventilator, and many months of difficult recovery. In the last stages of recovery I did quite a bit of skating for physiotherapy!!!! (I fell a lot). Mostly recovered now, but still have significant weakness in my ankles. I avoid colds like the plague now. Hope you have a full recovery and thanks for the video! 🙂🙂🙂
My symptoms onset was really similar to yours. I’ve just had my first IVIG and had pretty significant improvement already after a weeks. 🤞🤞🤞
Good luck with your recovery, man! Been diagnosed with CIDP 4 months ago. Today I'm starting my 3rd IVIG cycle. Hope it works. Doing I all can to keep active: swimming 3 times a week and learning paracanoeing. Seems to me that keeping your mind in a relative calm state is maybe the greatest challenge. Looks like you are doing a good job! All the best from Brazil
Appreciate the kind words and Big ups on your recovery! I’m coming up on my 4th cycle, seeing some good improvements so far and hope you see even better results soon!
I’ll be sharing more of my daily life + recovery efforts.
Let me know if there’s any topics you’d like to see ✌️we’re not alone and we got this ❤️
Thank you for this! I was watching a music video and this came up in my feed, simply due to CIDP Google search
I am a cancer survivor who had a taxane chemotherapy. I also have several heavy metal toxicities. I have autoimmune arthritis (psoriatic).
I was first Dx'd with PN, then small fiber neuropathy (via 3 skin punch biopsies), and now CIDP.
I had Gammunex-C infusions every 4 weeks, then every 3, from Jan-Dec of 2023. Now my new 2024 insurance is denying it. I'm closing in on week 8 awaiting an appeal process.
IVIg was a "lifesaver" for me, not just for neuropathy, but also my PsA. I "cried uncle" this week and asked my rheumatologist for oral prednisone.
I'm on Gabapentin 600mg x 4/day. I also do PT, acupuncture, osteopathic manipulation, a pain clinic, and an infrared sauna.
Hang in there, and thanks again!
I was dx'ed cide 😢.. this is a scary disease, 35 days hospital. I am moving as much as i can.😊
Thank you for your story.
When I was told I had CIPD in 2022. I said: "What is that?" Scary when I heard the full name. Never heard of this rare autoimmune disease. I have it from the knees down. It started on my left leg then moved to my right leg. I was so bad I was walking on a walker and had drop foot. I was embarrassed when I would fall and need help up. With IVIG for 10 months, physical therapy, Alpha lipoic acid, and B-12, I am improving. I use my cain less, but I need hand rails for steps. No longer on IVIG and hope to stay that way. Sketcher shoes that keep my ankles straight, and calf stretches help me keep improving. I hope you keep improving too. Long road.
Thank covid vaccine and covid for this.
bingo
I am part of a study of people who got the vaccine, developed Long COVID and then got CIDP.
Are you a neurologist? …..or just a good guess.
I would like to chat with you. I got it back in 2015. My first doctors thought it was all in head. It was scary stuff and my first doctors were just not knowledgeable about it. Went to MAYO clinic and they figured it our, but it was still hit or miss on treatment. I hope you are better. Jerry
Courage, I'm in the same situation as you, just started in August 2023.I'm from Brussels Belgium.
I started treatment in August as well. How is it going for you?
I hope you can reach out to me. I was first symptomatic in 2012, diagnosed in 2018 and am for the first time at my best baseline with no IVIG/prednisone in years after having a stem cell transplant 2 years ago. It’s a really big deal and it’s the only thing that will stop the progression. Happy to discuss.
How did you find out about the stem cell transplant option?
I had to be diagnosed at a hospital in Mexico even though I have a Blue Shield PPO plan. No doctor in the US even suggested I see a neurologist. I was misdiagnosed for eight years with “Peripheral Neuropathy” when it’s really CIPD burning me alive. I can’t even get one of e Neurologists to order IVIG for another 2 months so I’ve printed the forms for my two PCPs to give it a go. Multiple pain mgt Drs. have offered me nothing so at the direction of a neurologist, that I just insulted told off because he couldn’t get lab work submitted in over a month, I’m going onto hospice for pain relief. Only in America where I pay about $850 a month for the best health insurance money can buy and have a medical background. Just found out yesterday this is fatal with an 8 year life expectancy.
Wonder where you went in Mexico- I can’t wait 12mo to get into UT southwest
I would like to know where you found out that this is fatal in 8 yrs? I am 7 yrs in with this monster and have m.s as well.
hello there , did u also test for ANA Test ? its for auto immune desease test ? i also diagnosed cidp by neurologist although my ANA Test is negative , but the EMG Chart indicating cidp symptoms
How are you doing now?
My son was diagnosed with GBS on August 22, 2021, and he still cannot walk or use his hands. He was in the hospital for a month and then in a rehab hospital for another month.
He's been doing a great deal of therapy. Initially, he did three times a week, and then we struggled to find a place that would take us, and eventually, they refused to keep seeing our son.
Several months ago, the doctor changed his diagnosis from GBS to CIDP. He's doing IVIGs every 8 weeks, but nothing seems to be helping.
Don't get me wrong, he's doing leaps and bounds better than when he got home from the hospital, but it's almost been 2 years.
How long did it take for you to become paralyzed after the first symptom? The reason I ask is that our son started stumbling about 12:30am on 8/22/21 and by 3:30am, he was completely paralyzed from the chest down.
Are you back to normal now? Do the doctors say you'll ever be back to normal? My hubby and I are incredibly worried about our son. It doesn't help that he has severe ADHD and is autistic. He's even a type 1 diabetic.
Any words of wisdom would be greatly appreciated.
I believe I have cidp but can't get a dr to figure it out been in pain since 2019 started after a flu vaccine every dr I go to says I'm healthy it's very depressing because I know I need that blood infusion
No more vaccines please. 🙏🏻
i haven't been diagnosed yet, been 3 months and numbness is getting worse and worse, hard to to walk and work. useless doctor says it's due to my diabetes type 2, i dont think so. started with my feet, then knees down, then all legs, now creeping up to my chest and back. part of my arms are starting to get numb, and the wonderful "free" healthcare in canada I was able to get an MRI appointment 1 year from now. I should very well be in a wheelchair in a few months or less. i'm very scared and I see no hope, and no help.
I wish the best for you. I hope you get a bit of luck.
Have they checked you for GBS(Guillain Barre Syndrome) at the very least?? Your symptoms sound atleast like GBS. CIDP is considered the "long form" of GBS.
I was diagnosed with GBS in March 2022. Had relapse in April 2022. Was recovering, feel strong enough to go to work but caught "the vid" in July 2022. It hit my already damaged nerves from GBS hard for 3 weeks.
Just saw my doctor after nearly 2 years. Told him I have residual pins & needles, numbness, muscle burning & weakness, neuropathy pain, severe fatigue, so on & so forth. He found previous blood work showed my B12 level was critically low.
B12 deficiency causes most all the symptoms of GBS & CIDP if the level is below 500. Mine was 193.
I just started a B12 injection protocol to see if it helps. I take 1 per week the 1dt month, then bi-weekly for 4 months, skip 1 month & then recheck my B12 level in my blood.
Usually If your deficient in vitamin B12, your also deficient in Vitamins B9(folate) & vit D.
We don't produce B12 ourselves. We must take it in through what we eat or drink.
Sources high in B12 are animal products like beef, beef liver, poultry, fish such as salmon; tuna & haddock.. eggs, milk products, nutritional yeast, or B vitamin fortified breads, cereals.
I did not realize how critically important the B vitamins are to the body nor did I realize that they cause the same physical, neurological & psychological problems that GBS & CIDP do.
I'm no doctor nor am I trying to give u a diagnosis, just simply saying what my neurologist found & how he's treating me so far. I go back in October to see if the B12 injections are helping.
Wish you the best & I pray God will help lead you to a doctor who will diagnose & treat you soon!
Did you take the shot? Lots of rare, aggressive, late stage development in young healthy people happening since 2021. Look around. People who were healthy and young suddenly started showing up with old people's diseases that are wiping them out. My prayers are with you.
Was diagnosed Wednesday this week am 74 years old
I have been diagnosed with CIPD about 7 months ago i am a anti vaxer and steered clear of jab. Still got it somehow😢
😞
I was diagnosed with CIDP early 2018...some days are bad and some days are good. One step at a time and you'll get there.
Would you say overall you've had improvement?
Yes. I can walk without any help and able to do some normal stuff around the house too.