I was wondering if anyone uses alpha lipoic acid for their cidp? Also does anyone know if taking that would alter an EMG or NCS? My husbands neurologist believes that his arm pain, numbness and burning and his burning and numb patches on his torso is his CIDP coming back, however she did a emg and ncs about 2 weeks after symptoms began and they came back normal however his csf protein is high 174, our insurance denied ivig treatments because of the ncs but his burning and pain is getting bad so we want to start the alpha lipoic acid but we also don’t want it to interfere with any future tests that would keep him from getting his ivig.
Thank you
Hello, my name is Ruth Stewart, I live and work in the Falkland Islands. I was diagnosed and given 6 weeks to live 15 years ago. I have been having regular infusions of Immunoglobulin every month for five days, 10 hours a day. I decided to look at a holistic approach to see if I could help my condition in other ways. I am a single mother of 4 sons. two have now left home, however I have a 15 year old and a 5 year old at home. I was told I would never work again, run or have another child. I now work as a Social Work Assistant 4 days a week, I have an evening cleaning job 5 nights a week, I run, I have had another baby (5 year old) I also went to the UK in march and finished a diploma level 4, and qualified as a Foot Health Practitioner. I have just started my own business one day a week. I have my infusions twice a year now for 8 hours in total. I am currently trying to push this to once a year. All of this has been achievable for me because I take the following vitamins
Alpha Lipoic acid
Vit C high dose
folic acid
Vit B12,6,3 and 2
Primidone (for the tremor in my hands)
I have some neuropathy in my hands and feet. I try to drink only herbal tea and water. I have also cut out refined sugar. I hope this helps you, I am convinced this helped me to get where I am. xx
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Hi Ruth,
Thank you for responding, what an amazing story. I am so glad to hear that you are doing so well.
I had no idea that you could die from CIDP. How did you know if you were low on your B vitamins? My husband just had his b12 checked and it was really high so they told him to no take his supplement anymore. I have no idea about the others, did you see a naturopath?
Thank you again
I took ALA but it did not help me. It has helped others though. I may have not been on a high enough dose. It should not affect your tests. Has your dr. disputed the insurance. My dr. always ordered and resolved with insurance based on my symptoms more than the testing.
I have been using ALA for about 3 years now. At first I was taking only 600mg, but after doing some research I learned that 1200mg is considered a therapeutic dose. I’m no doctor, but am always trying different supplements in an attempt to help my CIDP. My doctor says to keep trying. I have been taking IVIG for almost 4 years, but my veins are shot. My doctor has been trying to switch me to Hizentra so I can take the IG Sub Q. Insurance has been denying the switch thus far.