Neuropathy, IVIG and healthy eating

Thank you for the great information. I have CIDP, with severe burning pain in my feet and ankles. I've been having IVig infusions for a couple of years (Privigen). I had to miss them in February because I couldn't drive. The infusion center is 30 minutes away. March isn't looking good either, as I had spontaneous bilateral Achilles tendon ruptures after taking Levofloxacin, and am wearing boots on both feet. I hope the infusions help your hips. How frequently will you be getting them? I've been having them 2 consecutive days every 4 weeks. The neurologist is trying to get me set up to do them at home once a week. I have a hard time evaluating the effectiveness of IVig because I also have had a spinal cord stimulator for 7 years, and take Cymbalta, Prednisone and Hydromorphone, along with other medications for other issues. My hope is that the IVig is helping with my pain, but also, along with Prednisone, is slowing the progression of the disease. I don't expect ever to be pain free, but it would surely be nice to have a measure of relief. We do what we can.

We don't eat red meat often, but we enjoy bacon and have pork chops from time to time. Mostly we eat chicken. I avoid sweet snacks, limit them to either 2 cookies or a few kisses a day. That's hard because I have a sweet tooth.

I may be looking at bilateral Achilles tendon surgery, depending on what the orthopedic doctor sees at my next appointment on the 19th. I'm scheduled for a right knee replacement in September, which may or may not happen, and I need a fusion of my left sub talar joint.

Can you crawl after you fall? I wonder if a medical supply might have a piece of equipment that would enable you to get back up on your own.

I should perhaps see if there's a neuromuscular neurologist near me, and a PT. I have a good neurologist who gives my case a lot of attention and interest.

Be careful. Without being too fearful. Do you use a cane or walker? My wife uses both, and I'm using a walker and a wheelchair temporarily. I finally got to start partial weight bearing this week. It felt really good to stand up after 6 weeks in a wheelchair.

Jim

Thanks for the information. It’s quite helpful. I hope you are able to find relief with the new treatment.

I went to see a dietitian today at the hospital recommended by my rheumatologist. The most interesting thing happened. So many people are pushing a meat diet. It is the worst thing for us. I was given this website to start using http://www.nutritionfacts.org. Stay away from sweets, red meat and wheat along with certain grains makes neuropathy and autoimmune disorders worse. Some of us have high cholesterol. I was told to look under the eating to lower LPA. What I liked it gave the exact measurements on how much to eat. It talks about when the great cousins (aka us) apes roamed the earth they all ate nothing but plant based foods. They had better health and lived longer. There are a lot of good ideas and videos. At our appointment time the dietitians had a guest lecture that also recommended this website for weight loss and better eating for neuropathy. I thought it interesting to stumble in on this lecture in the hospital. Just thought I would share it.

Good morning, @artemis1886

Your comment struck a familiar note:

" I thought it interesting to stumble in on this lecture in the hospital."

Because I can't drive at the moment, my partner has been chauffeuring me to my doctors' appointments. With the doctors' okay, she has sat in on my visits. She has her own doctors' appointments to go to, as well. We have both commented upon what has seemed to us an added emphasis on nutrition on the part of our many doctors. Neither of us comes away without our doctors' urging that we pay attention to what we eat. My partner and I don't recall our doctors giving so much emphasis to nutrition in the past. If this is a trend, we applaud the trend!

I wish you an enjoyable weekend.
Cheers!
Ray (@ray666)

Ray and @artemis1886 - I too am very happy with the emphasis on healthier foods. I can say that my primary of over 20 years, a nurse practitioner, always asked "how are you eating" and was very concerned when I had a series of illnesses that caused me to drop way too much weight. Her last comment to me, at one of our last visits before she retired was "You finally look healthy again"

I think back to the 1960's and 70's - I had a great poster out of the Mother Earth News that was a different kind of food pyramid. It promoted foods by their nutrient density - the more nutrients, and the lower the saturated fats and calories, the higher it was on the pyramid. It was posted on the kitchen door, and we referred to is for years - especially when it cam to choosing foods for our kids.

And I think back to how I was raised - garden grown food, fresh in summer, canned or frozen for winter. Beef pork and chickens from local farms. Every dinner included a salad and another vegetable, a starch and a protein. My mother's philosophy was "the more colors of food on the plate the healthier it is."

Now my "littles" are learning the same at school and daycare, so I guess it's about time our health care providers do too.

I can’t drive my so my son took me. I have tremors and seizures. I recently had a seizure so I can’t drive for six months plus I can’t feel my feet. As an RN I always look to see what lectures are going on in the lecture hall at the hospitals for continuing education credits. I go looking for them. I took several nutrition class for myRN degree. At the time I did not have the problems I do now.

Hi, Sue (@sueinmn)

As some here in the Neuropathy forum know, in addition to contending with my idiopathic neuropathy, I’ve been struggling with various sepsis symptoms since late March. My most bullheaded sepsis symptom was (it’s close to being healed now) a nasty long, wide, and deep wound on the outside of my left foot. I’ve been seeing a wound specialist these past few months. Among her various approaches to mending my foot was her strongly advising I load up on protein and drink a ‘medicinal beverage’ called Juven, comprised of 3 grams of calcium β-hydroxy, β-methyl butyrate, 14 grams of L-arginine, and 14 grams of L-glutamine. She said over and over again, ‘Many people find it hard to believe, but wounds respond favorably and heal more quickly to proper nutrition.’

Cheers!
Ray (@ray666)

My problem is I can go days without eating due to the gastroparesis. There are some days he will ask me when I last ate and realize it’s been days.

Your wound care nurse is absolutely correct! We always load up on protein before and after any surgical procedure and when ill. I have been having a problem with repeated antibiotic resistant staph infections (not MRSA thankfully), and next time one pops up I will definitely be looking for the Juven supplement.
Sepsis and wounds that won't heal are the pits! I had a moderate wound on my shin in January, and it took 4 months and lots of meds to finally heal - my primary was about to send me to a wound specialist when it finally healed - leaving an ugly scar. Good thing it fits in with all the others I have acquired in life!

Good morning, Sue (@sueinmn)

My first encounter with the body’s miraculous way of mending itself if left almost on its own, aided by proper nutrition, exercise (insofar as that’s possible), a good night’s sleep, and (most essential!) a positive outlook on life, occurred a dozen years ago when I fractured my humerus. I recall sitting in the ER doc’s cubicle, my busted arm in a temporary sling, and being shown some X-rays. The first to be shown made me wince: an upper arm, the big bone broken, contorted, the humerus’s two ends seemingly so far apart they’d never meet without some serious surgery. My first thought: ‘I feel sorry for whomever that arm belongs to!’ What I saw on the X-ray looked so bad I couldn’t believe I was looking at my own arm. When the doc told I was looking at my arm, my thinking shifted to ‘How soon can you operate?’ His reply: ‘An operation won’t be necessary. Your busted humerus will mend on its own. It’ll take time, but it will happen. You’ll be amazed.’ And amazed I was. With every follow-up X-ray, I saw my busted humerus slowly, gradually, painstakingly doing what it had to do to make my arm whole again.

I was equally amazed to watch my sepsis wound heal, slowly drawing together, shrinking, and growing shallower at every dressing change. Between these two experiences––my snapped humerus, my wounded foot––I’ve come to respect the magic of the body’s ability to mend itself if we only feed it properly, rest it as much as we can, exercise it (within bounds), and believe it will one day be whole again.

Cheers!
Ray (@ray666)

P.S. How we deal with chronic conditions like PN is a matter for another post, another day.