Treatment-Resistant Variant of CIDP - Dean's Story

To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
#cidp
#cidpawareness
#livingwithcidp
#cidpsupport
#cidpadvocate
#patientadvocacy
#rituximab
#plasmapheresis
#cidpwarrior
#gbs
#invisibleillness
#autoimmunedisease
#chronicillness
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy

[@TEPO--]

Thank you, your sharing is much appreciated. I so relate.

[@Beeloved936]

Everyday give Thanks to the Lord! His mercies endure forever...

[@tamermikhail2488]

Meeting Dean was an inspiration on how to concur this disease. The inspiration comes from his emotional strength

[@ILV2597]

I have CIDP is there a way to contact him?

[@virginiawylde9765]

Thank you for sharing. My husband has had CIDP for 16 years. He has a black belt in Karate and played hockey three times a week. In 2018 he had a very bad case of we thought was flu, and since then he has spiralled down wards. Steroids have not help d him, and he didn’t experience any side effects, he actually lost weight. He can still walk with a cane, but he is emotional exhausted. HIs dream was to teach our grandson to skate and throw a football, now he needs assistance to get dressed. Thank you for sharing your story. Stay well!

[@blacksun496]

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

[@kevinbaxter7390]

GBS is real and hell and 5yrs on still fighting 💪. 🇬🇧 And now MMNCB too add.

[@DanielOrtegoUSA]

The first IVIG I had at Walter Reed caused a-septic meningitis because the infusion rate was set too high. My neck hardened up and I had a class five headache. Overtime I received treatments that were adjusted accordingly.

[@mycolleeny]

PTSD of this ordeal is real. Oh my goodness what a journey for Dean and his family. A real hero and a fighter, he needs to write a book on what we all need to be reminded of. Living a better life....appreciating the moments being present and never giving up.

[@gbs-cidpcanada5886]

"Hello, Oprah's book club? I think I have a suggestion for next year's best read!"

[@cdrobirds]

I too have CIDP. I wish you all the best with your drug therapy, etc. It’s a battle.

[@blacksun496]

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

[@uniomystica368]

@@blacksun496thank you!

[@dennisd5413]

21 year battle for me I was finally diagnosed in 2000 and was resistant to all known treatment at the time I was in a wheelchair and very depressed and getting worse after everything that was tried my neurologist wanted to try cyclosporine which at the time was experimental at the time but it made all the difference for me it has kept my cidp from progressing and flare up at bay I now have the ability to walk and use my hands with limitations good luck with your journey

[@sharonmackwell1908]

cyclophosphamide?

[@flyingace1057]

Dennis, thankyou for sharing and may you have continued success with you healing 🙏.

[@tanyaleigh8796]

I hope you're in good health

[@mofo.jones77]

Hey there I would love to talk with you I'm pretty sure I've been dealing with this for a long time I have to talk to my doctor. Please respond if you see this.

[@prayerstojesus]

same here bro same time you are strong bro i still get emotional cant run and jump but will run and run in his name but you got some good doc who pulled you through i was in hospital for 8 months they just ripped me and no results when money was over they let me off but gods good all the time he saved me now recovering from home

[@anneswitzer4833]

what an incredible story of an incredible journey to hell and back by an incredible man. Love, Hugs and Prayers to you, Dean and your wonderful family :)

[@gbs-cidpcanada5886]

Dean is one of a kind, isn't he? We all agree that he has a gift now because of his journey. His fight, determination, perseverance, and positive attitude is admirable, and something we should all try to emulate!

[@ahmedj4921]

L

[@ahmedj4921]

0

[@flyingace1057]

V

[@flyingace1057]

E

[@cryptomama6455]

Our 29 year old son was diagnosed with CIDP this May. Waiting for results from more bloodwork to find out if he has the rare variant because IVIG is not working. Thank you for sharing your story of hope.

[@CheriBomzArt]

THANK YOU FOR YOUR STORY!!❣️ I HAVE A 72 YEAR OLD close friend, currently on a ventilator & has trach. They're trying to wean him off. It's been a little over a month. They are suggesting that he may not want to be revived from any heart attack, etc. I personally believe that he should have more time to rehab. I will show him some of these testimonials. Searching for answers...

[@Pj287.]

I have the same form and the same treatments. I too went home after the first week and days later was literally carried back. So much of this sorry i designated with. Just hit my 3 years (age 29) when I was first diagnosed. Im trying to go back to work now and driving again (with AFO’s) and praying i will be able to soon be a mother…terrified I’ll get a relapse after delivering when hormones drastically change. I deal with poor balance, hand tremors and neuropathy. Best thing for me is taking meds on time, sleeping well, nutrition, and working out regularly like walking outside or lifting weights. I have physical therapy of and on now when needed.

[@littlenormy]

Good luck/your a strong man.

[@mofo.jones77]

I am so glad to have stumbled upon your videos. I believe I have been living with this for a long time. I have multiple sclerosis and they keep telling me that it's just that. I think I got the double whammy. I have become a quadriplegic in three years. I really hope that this is something. Thank you so much. I'm really hoping you saved my life.

[@blacksun496]

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

[@hardrock6034]

Jeeze man. Great story. Very inspirational. I start rituximab in 5 days and so glad you posted this! Thank you.

[@adaviel]

Similar. About 8 months from first weakness to a diagnosis with nerve impulse speed tests. First dose of IVIG was a miracle cure, but wore off in 6 weeks. Successive doses had less and less effect, leaving me unable to move except my head, and with difficulty swallowing/coughing/sneezing. Steroids had no effect. Rituximab takes 3 months to work. Now slowly improving and can work a mouse and wheelchair joystick; swallowing about normal.

[@melissacoury9826]

Prednisone and rage, yes that is my son. SO scary.

[@tanyaleigh8796]

does Prednisone make you mad?

[@frederickwilliams5695]

I have this condition and I know what you have been through and I am glad you are doing much better who can I speak with to share my story

[@flyingace1057]

I've been seeking a true diagnosis for many years. Finally, found an independent neurologist that was not willing to give up before finding the correct diagnosis. Today 9.6.22, I contacted GBS/CIDP FOUNDATION, looking at their web site, it shows that many options of help for the suffering ( including suggested doctors, groups therapy ect..). Like I said, I'm just getting started with them but they were very helpful today. May God Bless and heal you in your journey.

[@frederickwilliams5695]

@@flyingace1057 ivig and a mix of steroids will get you back on your path to recovery I’ve been doing everything on my own again after about a year of treatment but take it one day at a time 😎😎😎

[@tanyaleigh8796]

OMG I think this is what is wrong with me. I can't get any dr to give me anything but Lyrica. It stopped working about a year ago after 6 years. I now have trouble with my hands and pain somedays is unbearable. I am told it's just fibromyalgia but I can't walk without an aid now. Can someone reach out to me?

[@flyingace1057]

I have been previously diagnosed with fibromyalgia by a highly regarded medical institution. An independent neurologist diagnosed me with CIDP by a blood test that many many facilities did not perform. Please, stay strong and don't give up trying to find the good doctor 🙏 ♥️.

[@tanyaleigh8796]

@@flyingace1057 Well I'm Canadian so because of that all the doctors want to save money by not sending patients for the correct procedures and tests. It took me 14 years of begging to get an MRI. I'm just now getting Lyme's Disease bloodwork. I was forced out the workforce 11 years ago. I was told I have fibromyalgia and prescribed Lyrica. I think it's just bs! I can't walk on my own or used my hands because of weakness, burning and numbness. It wakes me up many times in the night. I'm considering ending my life while I still can. btw, beautiful dog. x

[@lesliehyde]

Question- have your medical providers referred you to pain management? If so, did they work you up for CRPS? I say this because I have a shit show amount of chronic illnesses. My list is- CIDP (diagnosed with some blood test ordered by my neurologist), CRPS (diagnosed in late 2007 and originally only had part of my right leg affected till it spread to the rest of the right leg, a result of the 1st GBS attack the CRPS spread to my left leg and as I had several "repeat episodes of GBS" and later diagnosed with CIDP, the CRPS has spread to nearly my entire body including my face and mouth), central pain syndrome (diagnosed by neuro who said that it was likely triggered by the un/under treatment of the chronic pain), hyperalgesia (increased perceived pain from painful stimulus), allodynia (pain from stimulus that shouldn't cause pain, adult onset tourettes (likely caused by neural pathway destruction and damage from a combination of the chronic pain and the CIDP), insulin dependent diabetes, adrenal insufficiency (secondary, likely triggered by meds needed for pain and what feeds the tourettes among a few others), Sjogrens syndrome (an autoimmune condition in which my immune system attacks my mucus membranes) and dysautonomia (short description is if the body function is controlled by my brainstem then chances are that function is fucked up and I have a wide array of body functions that aren't working properly). Luckily my CIDP is behaving with being on maintenance dosing of IVIG and the hydrocortisone I'm on for the adrenal insufficiency and even more luckily is helping a bit with the pain and the Sjogrens.

[@tanyaleigh8796]

@@lesliehyde I don't know what CRPS is. But and update on my condition, I'm in a wheelchair now, have left side pulling down like gravity, terrible balance , chronic facial burning, and neck and shoulder pain. My left leg is agonizing at night. It feels as if bees are stinging me and I have fire ants crawling on the inside. Nope, I'm getting no help.

[@tanyaleigh8796]

@@lesliehyde I'm so sorry to hear of your health struggles xo

[@riadghanma9954]

Has any relapse happened to Dean in the last 4 years?

[@thomaswood7495]

Your doctors first thought was acupuncture? You need to ditch that guy or cow