Understanding CIDP (Chronic inflammatory demyelinating polyneuropathy) with Dr Vera Bril
ฝัง
- เผยแพร่เมื่อ 15 ส.ค. 2024
- Dr. Bril explains what CIDP is, how it affects the body, what symptoms are common, routes of recovery, and what to expect post-diagnosis.
Questions:
(0:10) How do you describe CIDP to someone for the first time?
(2:02) What symptoms do you look for when diagnosing CIDP?
(2:41) What can be done to help patients get diagnosed early and properly?
(3:14) How would your treatment differ for adult and paediatric cases?
(4:10) How important is early diagnosis in recovery?
(4:47) What does recovery look like?
(5:25) What supports can be given to people living with CIDP?
(6:08) What are some longterm residual symptoms that patients can expect?
(6:46) What advice would you give to someone recently diagnosed with CIDP?
(7:13) What is one of your most memorable patient stories?
To learn more about The GBS and CIDP Foundation of Canada, please visit
www.gbscidp.ca/
/ gbs_cidpcanada
/ gbscidpcanada
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.
How are you now 😢
@@mohammadhossain5547 I’m doing well hope you are too 🙏🏽
Thank you for your advice. I was just diagnosed. Do you eat bone broth or chicken livers?
@@mariannasharp3662 definitely bone broth. Not a fan of chicken liver but I’m not against either.
Also you can do some research on serrapeptase. It is excellent for autoimmune disorders
It took almost 3 yrs for my mother's diagnosis. We found out in November 2023. She is immobile and can only lift her arms a few inches. Last week, she was diagnosed with breast cancer. Her oncologist has to speak with her neurologist to even give recommendations about cancer treatment. And time is of the essence! It's so complex and I'm so scared. Anyone else experienced anything similar??
same i had got it in nov ‘23 and now is walking and getting better im 17!
God bless you for your research and discussion of a disorder that more people have but don't know.
over a period of 1 year starting in 2019, I went from symptom free to staggering around with no balance, yet still a healthy strong upper body. I got diagnosed with CIDP in 2020 (which is when I started IVIG), but more recently DADS Anti-MAG..
The Infusions have restored about 25% of my plantar flexion.. but I have loss of Axon in all of my toes. I'm glad I know what that's called now.
I got IVIG too! I’m a 12 year old child, and it was really weird. I went untreated and hadn’t went to a doctor for about 3 weeks. I kept telling my grandparents my legs and hands were numb and tingly, and it got so bad I got weak and kept falling. I went to LeBonheur Childrens Hospital in Memphis, TN, and was there for 8 days. I hope you’re doing better.
@@sophiashaw7684 you're a very brave young lady for going thru all of that. I can't imagine that happening to me at that age.
@@sophiashaw7684 sorry, I'm Sean.. that's my other account. Same person. 🙂
@@sophiashaw7684 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,I have been living with CIDP for 4 years now. IVIG for a year with no improvement. I have the Lewis Sumner variant. My most affected area is my right arm and hand, but the loss of energy, problems walking up stairs are big concerns for me. I have had to give up a lot of things in my life.
No one is discussing nutrition and exercise. Jelinik or Wahls' diet and exercise may be worth a try
Thank you dr. Very encouraging
Ferritin levels have been 600 IGa 351 tingly burning toes, muscle cramps in calves, and fasculations all over body, like finger that moves on its own, started in 1999, toe burning about last year. Had mri on spine and brain 10 years ago and no cns lesions, so Im guessing its has to be perephrial neuropathy.
I was first diagnosed with GBS in 2016 and recovered. Then in early 2019, the numbness and tingling came back. I was recommended to another neurologist and she diagnosed me with Idiopathic Transverse Myelitis.
What are the differences between these 2 and CIDP?
I am from Egypt I have CIDP my treatments are mabthira every 3 months and cellcept 500 4taps every day.
Interesting how there is no discussion to as what is causing such a problem.
Also did you ever discuss gut and diet problems? Because there is a major link and not to mention possible virus infections that could have started this issue
Lyme disease, babesia, other co infections can cause. As well as Guillian Barre Syndrome ...
Thanks
My sister is diagnosed cidp but we live in Afghanistan I don't know of any treatment
I am from india my mother also suffrung from CDIP&GBS
Caused by seed oils, fructose, and other food poisons!
and the c19 vaccine
@@sunthatiamno it's not
If you did even a cursory bit of googling you would see instantly that in fact it is. @@matt-vl1ph
MattvL1ph How do you know?
Causes are unknown