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.

Medicare Part B has covered my IVIG since my start date in 2003. At no time have any of my treating facilities billed IVIG has Part D.

The people to ask about any type of coverage are the people providing the service. Believe you me, if they have any doubt, they will ask you to sign an Advanced Beneficiary Notice (ABN). If they do not ask you to sign an ABN, take your pick- 1, they forgot. 2. They know they’ll get paid.

Generally speaking, if an ABN is required and Medicare will not cover the service, the first time notice sent to you will say something like this: “Medicare does not cover this service. It looks like you did not know Medicare would not cover this service. You are not responsible for these charges.”

Don’t try it again, though. Medicare now knows you have been told.

I believe it is factually incorrect to state you must be bed-ridden to qualify for Medicare home based infusion. Yep, been there, done that to. The term I’m familiar with is ‘homebound.”

As defined by Medicare: “Normally unable to leave home unassisted. To be homebound means that leaving home takes considerable and taxing effort. A person may leave home for medical treatment or short, infrequent absences for non-medical reasons, such as a trip to the barber or to attend religious service. A need for adult day care doesn’t keep you from getting home health care.”

However, reporting you do your own shopping will get you punished. Yep, a personal anecdote.

A short review- “For a patient to be eligible to receive covered home health services under both Part A and
Part B, the law requires that a physician certify in all cases that the patient is confined to his/her home. For purposes of the statute, an individual shall be considered “confined to the home” (homebound) if the following two criteria are met:
1. Criterion One: The patient must either: – Because of illness or injury, need the aid of supportive devices such as crutches, canes, wheelchairs, and walkers; the use of special transportation; or the assistance of another person in order to leave their place of residence OR – Have a condition such that leaving his or her home is medically contraindicated. If the patient meets one of the criterion one conditions, then the patient must ALSO meet two additional requirements defined in criterion two below.
2. Criterion Two:- There must exist a normal inability to leave home; AND – Leaving home must require a considerable and taxing effort.

Read all about it here: https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c07.pdf

Again, this is not your main area of focus. This is the providers problem to document, if they want paid.

Yes. It is possible to get Medicare while on Social Security disability prior to age 65. And, yes, I did.

But. You have to wait two years.

“We automatically enroll you in Medicare after you get disability benefits for two years. The two parts of Medicare we enroll you in are hospital insurance and medical insurance. ”

Use this ssa.gov website: https://www.ssa.gov/planners/disability/dapproval4.html

Please call them (SSA) when you have questions. “Most people have both parts of Medicare. If you have questions about this coverage, you can contact Medicare toll-free at 1-800-MEDICARE (1-800-633-4227) to speak to a Medicare Customer Service Representative.”

More from that page: “Help For Low-Income Medicare Beneficiaries If you get Medicare and have low-income and few resources, your state may pay your Medicare premiums and, in some cases, other Medicare costs for which you are normally responsible such as deductibles and coinsurance.

Only your state can decide if you qualify for this assistance. To find out if you do, contact your state or local welfare office or Medicaid agency. “

Of course the dose is best determined by your doctor.

The Cleveland Clinic as a Pharmacy publication on line, https://www.clevelandclinicmeded.com/medicalpubs/pharmacy/pdf/Pharmacotherapy_XI-1.pdf, and it includes this discussion:

“Dose:
There are three key points when dosing IVIG based on the Formulary restrictions. First, the
dose of IVIG is calculated based on ideal body weight (IBW), not actual body weight (ABW). If the
person is 30-40% above IBW, then an adjusted BW will be used. Therefore, it is important to have
the current weight of the patient. Second, the total dose of IVIG should be no more than 2 grams/kg
(e.g., 0.4 gram/kg/day for 3 to 5 days or 1 gram/kg/day for 2 days). All doses greater than 1 gram/kg
must be approved by the Drug Information Center. Third, IVIG should not be dosed any more fre-
quently than every 4 to 6 weeks.”

Note that the dose is to be based on ‘ideal’ body weight, not actual body weight.

Further, according to Medscape, “Maintenance therapy should be tailored to the individual according to the duration of the improvement after each infusion. The most common regimen involves 1 g/kg or 2 g/kg every 4-8 weeks, as needed.”

http://www.medscape.org/viewarticle/747804_5

So, one might conclude, without knowing the doctor’s reasoning, that 40g every 4 weeks might be low.

A second reference source is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/

“The recently published IVIg in CIDP Efficacy (ICE) trial was the largest and longest randomized, double-blind placebo-controlled trial demonstrating sustained efficacy of IVIg in CIDP utilizing a loading dose of 2 g/kg administered over 2–5 days, followed by repeated infusions of 1 g/kg administered every 3 weeks for 6 months [Hughes et al. 2008].”

Note that in this discussion the mention of loading dose is “administered over 2-5 days”. Therefore, a two day loading dose may not be too unusual.

Generally, speaking, for headaches drink more water the day before and the day of infusion. As, lots of water.