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.

There are some reports that Spinal Tap is positive in only 80% of cases. This website lists the following ways to Diagnose CIDP.

“How is CIDP diagnosed? Diagnosis of CIDP is based on the symptoms of the patient: Symptoms such as loss of sensation (numbness), abnormal sensation (tingling and pain), loss of reflexes, and weakness (difficulty walking, foot drop)
Tests such as nerve conduction and EMG (usually showing a demyelinating neuropathy), spinal fluid analysis (usually showing elevated protein with normal cell count), blood and urine tests (to rule out other disorders that may cause neuropathy and to look for unusual proteins)”

Dr. Lewis expands on reflexes with this, “Deep tendon reflexes: Reflexes characteristically are diminished or absent even in regions with only mild weakness.” As well as other clinical (in the office) and laboratory tests.

Do as BryanF says, If you haven’t been seen by a Dr. outside the ER you might consider finding a neurologist familiar with GBS?CIDP.

There is on-line literature discussing a rare condition called Recurrent GBS. Medscape says, “The interval between attacks ranged between 4 months to 10 year (mean 39.5 month).”

The Journal of Neurology, Neurosurgey & Psychiatry states, “Recurrent patients (mean age 34.2 years) were younger than non-recurrent patients (mean age 46.9; p = 0.001) and more often had MFS (p = 0.049) or milder symptoms (p = 0.011).”

MFS means Miller Fisher Syndrome.

This only means that it is possible to have a recurrence, particularly at your age. However, GBS like conditions lasting more than 8 weeks are generally considered to have become CIDP.

Your anger at this condition, subsequent job loss and all your symptoms is understandable. It is fair to say that many members of this forum ,over the years, have experienced what you are having now.

There is a Center of Excellence in Az. Barrow Neurological Institute 240 W Thomas Road, Suite 400
Phoenix, AZ 85013 United States of America Suraj Muley, MD – 602 4066213 https://www.barrowneuro.org/

Many organizations and some Church groups and counties offer free depression group sessions. Consider finding and attending one.

If Phoenix is too far away, call them anyway and see if they are willing to refer you to someone closer.

I currently receive IVIG paid for by Medicare at the local Cancer Infusion Center courtesy of the hematologist there who follows my prescribing doctors rx. If you can’t get paid at home, leave home.

Neither Medicare Part A (hospitalization) nor Medicare Part B (doctors and outpatient) will cover what we think of as standard, get at the drug store prescription (Rx) drugs.

Unless you already have documented “Credible” Drug coverage you must choose and purchase a Medicare Part D plan. Which drugs are in their formulary (means drug list approved by them for use) and what
tier Level determine the price and availability.

Check carefully with the Part D Plan Administrator prior to initiating coverage.

I used to take some, even all, of those meds. Although never all at once. I quit them all, one by one and haven’t taken any for years. The Part D Plan I have estimates a 90 supply of all of those exceeds $1,000.

Back to keep your credible coverage or prepare to pony up.