CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

IVIG...you too? I was receiving infusions for about a year and then suddenly Medicare also rejected further infusion as there were no clinical trials for my specific condition proving efficacy. My doc appealed three times, all for naught.

I received IVIG for about a year for: Inflammatory neuropathy, Axonal sensorimotor & small fiber neuropathy...until Medicare rejected further infusions as there were no clinical trials for my specific dx. At the time I was receiving it I wasn't sure it was making a difference, but now, after being off of IVIG for 6 months, I do believe it was slowing the progression

I had 6-7 mos of IVIG infusions consisting of 2 days every 3 weeks.
Sorry to say, they did nothing for me,so my neurologist discontinued them.
I felt bad because they were so expensive, I saw no need to continue especially since they didn’t lessen any of my symptoms.

I know MS is another for demylenating autoimmune disease, but that's my diagnoses. Regardless, I have drug sensitivity so I do Copaxone (a synthetic myelin) with vegan keto diet. Keto takes a lot of research, and make sure you have the right of nutrients, RDI of vitamins and minerals, plus extra hydration for potassium etc (must avoid keto acidosis). I drink biosteel....
But think, nuts seeds coconut, Mct, pea protein, vitamins, tahini, olive oil, spices, veg powders and juices, berries etc. Anyways saw instant affect for my brain fog.

I don't do much activity, so I don't need that many calories, just follow the macros and rdi,

If you just want to eat healthy, do a Mediterranean diet and cut out anything that makes your symptoms worse (it's easier to do). Then add mct and a hood multivitamin with methylated bs....

That's what I found works for the "untreatable " symptoms, making it more bearable. I also take other supplements to help because healthy people can make all sorts of compounds, but aged or unwell people have recently been shown to benefit from certain supplements.... again this is new research, ask your doctor before starting any regime.
If Doing diet, gains keep gaining after the one and two and three year mark, even when triggers (ieweather etc) and symptoms are conistent . I found the most relief for the terrible brain fog using diet, and it may not be worth it to you for drastic dietary changes if the symptoms are different. Always have medical supervision. I have nutrition background and never thought I would do keto, because I don't eat cheese or meat or eggs, and because It is challenging and potentially dangerous. It's the only food my body will handle - I react to animal products and sugars now. I did the low fodmap thing at the beginning... that's a good starting point.
Good luck, healing thoughts to alll

Thanks for your input!

I have severe chronic polyradiculopathy (legs/lumbosacral and neck) with neuropathy in right arm. I have not had a biopsy to see if I have sfn. So, I’m not sure where to look. I have appointments with nm doctors and pain Management and am not certain what I should be asking or telling them. I’ve been having such pain and weird symptoms. I need help.

I”m not sure what I’ve got. I have some neuropathy and radiculopathy but dont have a dx for what has caused the polyradiculopathy. Its such a long story.

My neuropathy has also been diagnosed with Polyneuropathy. I was actually given nothing different to deal with it other than a recommendation to have cervical surgery which at 86 I am too old to be willing to go with that kind of surgery. I was told by not having the surgery I am eventually risking being confined to a wheelchair. I sure don’t want that but neither do I intend to have surgery at my age. I have already had my lumbar done to stay out of a wheelchair. It made no difference in the numbness in my feet and legs. I was diagnosed with neuropathy in 2013 but have dealt with it far longer. I could not take gambapenten nor lyrica but do take x2 5 mg of oxycodone at bedtime and have for seven or so years. It helps with the burning in my toes and heels of my feet during sleep time. I do not use it during the daytime hours. I am very aware of its addicting nature. The choices we make but need to be our own advocate in what we allow as far as surgeries. I do not understand this new diagnosis. However, I have never been diagnoses as diabetic. I have a terrible time with my balance and fall backwards easily and it definitely effects my walking. I have never been a smoker and only drink a margarita with Mexican food or a glass of wine occasionally so actually, never have been a drinker. Rarely! It’s a puzzling condition to live with.

@nemo1 I’m glad you were able to get appointments with those doctors. I included a link to the Autoimmune Association’s ‘tips on diagnosis.’
https://autoimmune.org/resource-center/diagnosis-tips/
You should get some good ideas from the site. You may also want to start a list of what hurts and what makes it better or worse, is the pain constant or occasional. List your weird symptoms. Do foods make anything worse. What makes things better. How long you’ve had these symptoms/pain. Everything you can think of. Write it down, grouping it be subject. As you do all this, questions will come to you.
I hope this helps some
Can you start working on this tomorrow so you’ll be ready for your appointments?

Thank you Becky for the helpful information and for the link. I will go there and see what I can find and use. I really need the help with appointments in this way.

One of my biggest problems are going to appointments unprepared.

I woke up twice last night out of sound sleep with excruciating foot pain and a cramp in the calf that felt like a Charlie horse. I stretched then took half of the muscle relaxer and am taking the lyrica soon. I have to conserve the lyrica and relaxer until my visit.

Something has to happen at these appointments.

Thank you again.

Have you tried appealing to the state board of insurance? I did that for another treatment and NY State approved the treatment.