March 16, 2020 at 2:36 pm
There is a Facebook group called CIDP. It has 7,100 members. I have learned so much from others there. Great forum. It is also very useful for recommendations such as the one you are seeking.
LynnFebruary 8, 2020 at 2:42 pm
Thanks for the info and links Jim. I am very frustrated. I also have another component going on, lupus. After chemo for breast cancer, my lupus went into remission. My PCP thinks it is playing a big role in this CIDP (meaning complicating things). I am seeing a neurologist at John Hopkins next month. He was recommended by someone in this forum. I am counting down the days.
You are a wealth of knowledge. Yesterday, I met the wife of one of the men who also has CIDP. Wow, is she a resource! She told me she didn’t like my brand of IVIg being Baxter. She is with the GBS/CIDP Foundation here in Ft. Myers, FL. I plan on becoming more involved.
I hope you are continuing to recover from your most unfortunate accident Jim.February 8, 2020 at 1:30 pm
Sandra – Have you done plasma exchange yet? I’m in your boat in that the IVIg isn’t really helping with nerve function. I finished my 7th treatment yesterday. Still having big trouble trying to go from sit to stand. It’s very frustrating so I am looking into PE as well. Both men I met with CIDP yesterday, while getting my infusion, are getting it 5 days a week each month. I am doing 2 days (40 mg each day) a month.January 12, 2020 at 7:58 am
My heart sunk when I read this awful news. I’m so sorry to hear you are dealing with yet another struggle. Being newly diagnosed with CIDP, I have learned so much from all of your knowledge and links. They have been a much needed resource. Thank you.
I hope you recover soon Jim! I’m happy to see you back on the forum. God Bless you!
LynnersJanuary 11, 2020 at 7:11 am
For what it’s worth, I underwent treatment for Stage II, Triple Negative Breast cancer 5-2016 – 10-4-2016. I then did 30 rounds of radiation. So early stage, no metastasis. I was doing great until I took a fall in Jan, 2018, then another fall 3 weeks later. No warning, no pain, just fell down. During chemo, I felt a distinct weakness in my right leg. It was difficult to go up stairs. I figured it was the chemo but today my weak leg (by far) is my right leg. I went to an acupuncturist, then an advanced pain solution Dr. then finally my PCP referred me to a neurologist. Diagnosed with CIDP in June, 2019. What is interesting is that I have had a very mild case of Lupus for 16 years prior to my BC diagnosis. I had my ANA tested throughout the years to see if it was still in my system. I always tested Lupus positive.
When my Dr. did extensive blood testing in June, 2019, he said my ANA was negative meaning I don’t have Lupus. So, did it turn into CIDP with the chemo I received for BC? I don’t think I will ever know but it is very suspect.
One final item worth mentioning. I did tons of research into chemo before I began treatment. I got 3 different opinions, one being the Mayo/Jacksonville, Fl. All said do the chemo as Triple Negative is the only BC with no targeted treatment. It was a must. My biggest fear was getting peripheral neuropathy as a result. I did the Dignicap so I wouldn’t lose my hair, and I put my hands and feet on ice during each of the 16 chemo treatments. Research found said if I did this, I would minimize neuropathy effects.
Instead, I have neuropathy in spades. Besides my weak right let, I discovered I was no longer able to point my toes. Probably one of my very first signs of CIDP.
I pray everday they find a cure for those of us with CIDP, or a treatment that is more effective. IVIg helps but not to the degree I would like it to.
LynnNovember 8, 2019 at 3:35 pm
Thanks for your reply and information, Ron. I am there with you as far as we are our own best advocates. No doubt.
I have been doing much research on this disease. I stumbled across Onno Faber through a Ted talk. He, too, is suffering from a rare autoimmune disease. His website is http://www.rdmd.com. It is for rare diseases, CIDP, being one of them. I now have all my Doctor records, tests, notes, etc. in one place. I am also kept informed as to clinical trials. One of his goals is to run all the data points for a person through a computer program to determin DNA in hopes to find a match to a drug already out there that will help the condition. I see a day in the future where this will be standard protocol.
Ron, I read a success story from a person who has received much relief via PE. Have you looked into that?
I am doing PT twice a day, riding a stationary bike as much as I can. Some days it is easier to do than others. I also bought a Vissiq neuromuscular trainer which has made it much easier to take walks. Ordinary walkers don’t let you stand up straight! Vizziq is brand new to the market. It’s developer is a lady who has MS. She is a physical therapist. Her name is Katherine Haig. I believe she has a couple videos on YouTube. You can google Vizziq if you are interested.