Treatment-Resistant Variant of CIDP - Dean's Story

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

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

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!

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

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

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

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.

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

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 :)

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.

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

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.

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.

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...

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.

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

Good luck/your a strong man.

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.

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

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