One of my doctors said to me, ‘you need more IVIG, more often. Proved to be accurate. I was on infusion once per week for a time. However, my MADSAM, Lewis-Sumner type was still slowly progressive.

Presumably you are posting here because the diagnosis is GBS. However, the talk of removing her from life support suggests otherwise.

I have heard, and read, that it is not unusual to be hospitalized. In fact, the information on this website states, in part:

“GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized”

There should be a team of doctors, including a neurologist, and treatment should be aggressively initiated.

Hope the best for your mother. And you.

Ditto on the steroid question. It ties in with long term use and age. For example, an NIH article says: “Steroid-induced osteoporosis remained a problem, especially in older patients.”

Sorry to say, welcome to the club. Insurance approval is a tedious, ever changing set of hoops to jump through. Your medical provider will handle that. A spinal tap is not always conclusive. Other criteria may be used to suggest a diagnosis.

Recommend you read this entire article by an expert and one of the members of the GBS-CIDP Global Medical Advisory Board Richard A. Lewis, MD.

updated June 2 2017: http://emedicine.medscape.com/article/1172965-overview

1. Do compression socks help?
No, not for me.

2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?
There are many forms of peripheral neuropathy. Let your physician sort out the cause and the diagnosis.

3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.
I have not heard of this. However, “The ALS Association is funding a major clinical trial to determine whether lithium can slow disease progression in patients in the early stages of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.” This is a study based on changes in the brain and spinal cord, not really applicable to immune mediated myelin sheath damage.

4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?
You’ll have to met your state and your doctor’s criteria for Motor Vehicle disability Placards. In my case, I met the Social Security Definition of Disability first. Years later, my primary doctor agreed to issue a DMV (Department of Motor Vehicles) certificate.

5. Does exercise/stretching actually work because it seems to make my muscles worse?
Yes and yes. Exercise, overdone, makes things worse. You’ll have to find your own limits by trial and error. Not exercising is not an option.

6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?
CIDP is an acquired condition. This means you just get it. Nothing genetic about it. Genetic conditions such as Charcot-Marie Tooth and Hereditary neuropathy with liability to pressure palsy (HNPP) should be ruled out if your doctors deems it necessary. However, because they are genetic you might be aware of a family history of these problems.

7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?
The first, loading dose, and ongoing doses of IVIG will be determined by your doctor. The total amount of fluid is calculate on your ideal body weight (or, should be). The actual dose (how much) and rate infused are up to your doctor and varies. My first infusion was hospital based over 5 days. No, I was not allowed to walk around. On-going doses, for me, averaged 4 hours. However, every infusion total load and dose is individualized. Yes, you you should be able to return to normal activities almost immediately. However, everyone reacts differently.

I have no recollection of a medical professional actively participating on this Forum in any meaningful way. Irrelevant, I guess. Now, a due diligence disclaimer, I am definitely not a doctor or nurse.

It would be of no particular significance for me to focus on one small part of a much larger test. Specifically, when you review a study such as this one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820196/

You’ll find what is significant, and that is the overall multiple location, multiple nerve groups and multiple motor test results which should include this (where NCS means Nerve Conduction Studies):

“Methods

In NCS, the motor nerves, median nerves, and ulnar nerves in the upper limbs were examined by segment; the peroneal nerve and the posterior tibial nerve in the lower limbs were also assessed. The median nerve was stimulated at the wrist, elbow, and axilla. The ulnar nerve was stimulated at the wrist, below the elbow, and at the axilla. The peroneal nerve was stimulated at the ankle and fibular head, and the tibial nerve was stimulated at the ankle and popliteal fossa. For motor nerves, the compound muscle action potential (CMAP) and motor nerve conduction velocity (MNCV) amplitudes obtained by supramaxial stimulations were analyzed by segment. The MNCV was measured in m/sec, and the amplitude was determined in millivolts (mV) by measuring the distance from the negative peak to the positive peak.”

Finally, the muscle mentioned is used to fully extend the leg. It’s a yes or no test.

I did not have GBS. A web search for “IVIG treatment related fluctuations’ resulted in a lot of articles. I chose one, which states:

“In an effort to improve this outcome neurologists may be tempted to apply plasma exchange or IVIg at an earlier stage of the disease–for example, when the patients are still able to walk independently.6 However, early relapses, treatment related fluctuations, occur in 8%-10% of the treated patients.7-9 It has been stated that especially patients with Guillain-Barré syndrome who are treated early in the course of their disease may be at risk for these relapses.8”

It seems to me you were treated very early.

As for cut to the quick- I would not wait to be seen 6-12 months later. If, I still had symptoms and was either declining or at best, not improving.

You like to read. do your own web search or start here:

http://jnnp.bmj.com/content/64/2/242

Good luck

Supplemental Insurance, by definition, is required to pay on those charges Medicare Approves. If Medicare does not pay, neither will the Supplement pay. Your Insurance guy should have told you that.

This is a personal decision. Seems a silly question to me. I don’t have a crystal ball that tells me I’m about to cross any line or I won’t need hospitalization or cancer treatment, or you name it….

Let’s say IVIG costs, $10,000, ok, maybe only $8,000. Like this: Amount charged: $7,945.00 Medicare Approved: $3,001.50 I may be billed: $594.67

These are real numbers.

Let’s round up $594.67 to $600 and let’s say I get one infusion per month, which I do. $600*12 = $7,200

My Medicare Supplemental Plan F costs $185 per month times 12 = about $2400. I know which one I choose.