Neurology/ diet/ IVIG

Posted by artemis1886 @artemis1886, Mar 7 8:14pm

I want to share what I learned today to help others. Neurologist are starting to become specialized for example like an orthopedic surgeon that just sees hip patients. When I went to Boston I did not understand why Dr Anne Oaklander (google she has some lectures on YouTube) said I needed to see a neuromuscular neurologist. I found out today it’s because they specialize in Neuropathy where another neurologist specialize in something else. That explains a lot why I could not get answers to what was going on with my symptoms. Been seeing a neurologist since 2002 he was licensed as a psychiatrist and neurologist. He passed away in 2022. Boy has neurology changed. His wife had what I had as far as neuropathy so he knew alot about it. He always told me if he passed away not to remain with that practice that they would not be able to help me. They don’t do Botox for dystonia/ spasticity/piriformis syndrome/they don’t prescribe muscle relaxers. So my question is what do they do? Just an fyi muscle spams and tremors go with neuropathy along with anxiety. ( Don’t freak out when your hands start shaking. I did it’s part of small fiber neuropathy along with migraines/dizziness). Just a warning check out a cardiologist to rule out heart problems with dizziness you can get cardiac autonomic neuropathy (CAN).I had a one month holter monitor test, sent to electrophysiologist was diagnosed with cardiac autonomic neuropathy but the bad dizziness just started so the cardiologist is repeating the holter monitor test to see if my arrhythmias have gotten worse. My left atrium enlarged in less than four months apart. So when you start looking for a neurologist we need to look for a neuromuscular neurologist, neuromuscular physical therapist (deals with neuropathy patients), immunologist and a rheumatologist (unless you know your cause we know mine is autoimmune but not the cause). My Ana, sed rate and CRP are all elevated but I test negative for everything. My RA bloodwork was 13 but you have to be 14 or above to be positive. Really one point off.
Also, Dr Anne Oaklander said to watch your weight being overweight can make neuropathy worse and cause neuropathy along with sugar. It will make the pins and needles worse (sugar) especially if you eat it later in the day. Dr Oaklander told me no red meat or pork. Pigs skin does not breathe they accumulate toxins in the meat which can trigger autoimmune symptoms (In New York they use them in landfills to help clear them out (they eat dead animals/ maggots along with a dead body) I could never eat pork again after RN school we had to take a nutrition class for our nursing degree. Dr Oaklander said red meat is hard on the liver to process and it increases inflammation in the body. (Along with fatty liver disease builds up fat in the liver becomes inflamed also no processed meats increases inflammation in the body especially if your is autoimmune). I all ready knew this but my husband and sons are red meat eaters.(they call themselves meatasaurus think t-Rex)
It was nice for my husband to be told he thought I was making it up since I don’t like red meat. They can’t live off chicken, turkey and fish.
I got a seal a meal and fix turkey seal it up and freeze it for luncheon meat. I buy hormone free meat.
This is what I have learned about neurologist and eating.
For me with 4 left hip replacements actebulum fracture and right hip replacement it is hard for me to just walk. When I fall I can’t get up because of my hips have to call paramedics if by myself or my son along with my husband help me up. Lost my balance twice in January and fell. Exercising is really difficult. I can’t do steps and I can only walk so far before my hips give out. I can only exercise in a pool since it is not as hard on my hips. That might change with IVIG therapy. It might get rid of the inflammation in my hips.
I was referred today to a neuromuscular neurologist to start IVIG therapy. The neurologist said it can take up to 10 treatments to start working and it works really well with autoimmune disorders. I am excited.

Interested in more discussions like this? Go to the Neuropathy Support Group.

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.



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

Please sign in or register to post a reply.