Treatment-Resistant Variant of CIDP - Dean's Story 

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

I have CIDP is there a way to contact him?

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

@@blacksun496thank you!

cyclophosphamide?

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

I hope you're in good health

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.

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

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!

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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

does Prednisone make you mad?

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.

@@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 😎😎😎

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 🙏 ♥️.

@@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

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.

@@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.

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