Hi Jim, Thanks for your thorough explanation. No, the first link no longer works. And the link that does work goes straight to the Affordable Care Act (ACA) Private Insurance Tab.

It’s true that the folks I know about went to Chicago before the Affordable Care Act became law. However, the majority of the costs for HSCT, other than travel and lodging, are mostly Medicare Part A costs and are covered 100%.

The rest, if you only consider the original ‘retail’ price likely looks very high. A comparison. My friend, on Medicare, just went to the hospital for 2 days and had two stents put in. Total ‘retail’ charges $187,000. Medicare authorized all the charges and paid $11,000 leaving only the few days hospital out of pocket for the friend to pay. About $1,200.

I have read your postings and know you’ve done your homework. I’m happy the Rituxan is working for you and maybe you’ve won a remission reprieve.

For those still taking Rituxan and having problems, the HSCT is still an option, as you point out. And, if for some reason a reader is on disability and under age 65 (70 for Seattle) it behooves them to keep an open mind about using Medicare to have the HSCT.

At any rate, for other readers, do what Jim has done- always check with the providers. Request a Medicare payment determination. They may have alternative ways of helping out. For example, when I went to Cleveland Clinic Ohio they had a housing option available provided by volunteers who provided free rooms in their private homes.

I’m sure Paula at Northwestern has talked over all of this with you.

And, now back to the original poster and what can be done about Rituxan related illness and finding CIDP experts.

More on the treatment Jim mentioned.

“Abstract OBJECTIVE:

To describe the response to rituximab in patients with treatment-resistant chronic inflammatory demyelinating polyneuropathy (CIDP) with antibodies against paranodal proteins and correlate the response with autoantibody titers.

METHODS: Patients with CIDP and IgG4 anti-contactin-1 (CNTN1) or anti-neurofascin-155 (NF155) antibodies who were resistant to IV immunoglobulin and corticosteroids were treated with rituximab and followed prospectively. Immunocytochemistry was used to detect anti-CNTN1 and anti-NF155 antibodies and ELISA with human recombinant CNTN1 and NF155 proteins was used to determine antibody titers.

RESULTS: Two patients had a marked improvement; another patient improved slightly after 10 years of stable, severe disease; and the fourth patient had an ischemic stroke unrelated to treatment and was lost to follow-up. Autoantibodies decreased in all patients after rituximab treatment.

CONCLUSIONS: Rituximab treatment is an option for patients with CIDP with IgG4 anti-CNTN1/NF155 antibodies who are resistant to conventional therapies.

CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that rituximab is effective for patients with treatment-resistant CIDP with IgG4 anti-CNTN1 or anti-NF155 antibodies.”

here: http://www.ncbi.nlm.nih.gov/pubmed/26401517

This gbs-cidp website has a list of Centers of Excellence.

http://www.gbs-cidp.org/get-support/centers-of-excellence-2/

Perhaps if you contact USF Tampa ( a center of excellence) they will have a referral to someone in Miami.

Website http://www.health.usf.edu/medicine/neurology/faculty

Phone Information

Department Of Neurology – 813-974-3541

Good luck.

Follow up with what Jim already told you. If his recommendation to “…be diagnosed..” is unclear- well, good luck.

http://neuromuscular.wustl.edu/antibody/pnimdem.html

Has a nice chart.

PubMed is considered public domain. I have copied the entire article here:

Curr Treat Options Neurol. 2001 Mar;3(2):119-125.
Asymmetric Acquired Demyelinating Polyneuropathies: MMN and MADSAM.
Katz JS1, Saperstein DS.
Author information
Abstract

More than a half a century after Austin’s initial description of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), the clinical spectrum of chronic acquired demyelinating polyneuropathies has expanded. Currently there are a number of entities that can be put under the heading of chronic acquired demyelinating neuropathy (CADP) based on differing clinical presentations. In this scheme, CIDP is used only to refer to patients with demyelinating neuropathies and generalized symmetric weakness. In contrast, multifocal motor neuropathy (MMN) and multifocal acquired demyelinating sensory and motor neuropathy (MADSAM) fall into the category of asymmetrical, multifocal forms of CADP. These are distinguished from each other only by the presence of sensory involvement. In our opinion, there are pragmatic reasons for splitting these clinical presentations into distinct entities. Although each of these clinical subtypes shares some basic similarities, there are important differences. MMN is usually considered resistant to corticosteroid therapy and the first line agent in this disorder is intravenous immunoglobulin (IVIg). MADSAM neuropathy can be responsive to prednisone or IVIg, and has a profile more analogous to classic CIDP with regards to its laboratory features and treatment response.

The short answer is that both MMN and MADSAM mimic CIDP with subtle differences.

these are only some of the reasons it is vital to be seen by an expert.

OK, good. Good that you checked on going to Mayo clinic. The limiting factor you report is your insurance. Turn the horse and cart around. Find out where you can go and be covered by your insurance.

This gives you a positive thing you can do.

GH already said it. I’ll tell you again. Quit doing this- “Google my own personal atrocities”

Did you call the Chicago area GBS-CIDP Foundation liaison as Jim suggested?

Sorry to hear about this trouble. Depending on the out of pocket costs to you, getting another ‘opinion’ is a good idea.

No, it is not unusual at all for different doctors to run all new tests. It happened to me everywhere I went. And, I went to multiple major medical centers where, yes, they always ran ‘new’ tests.

Further, in two instances the Chief Neurologists disagreed over the proper diagnosis for identical findings.

Please do not knee-jerk react and quit IVIG. IVIG is one of the primary treatments for CIDP. It is possible to have ‘weird’ variants of CIDP. In some cases the disease does spontaneously go into remission, meaning you will probably feel better. However, relapsing-remitting and just plain old goes on and on variants also exist.

Please do not discard the benefit proper treatment will give you.

In the USA if a doctor does not have ‘privileges’ at a Hospital they are usually not allowed to practice there.

Further, there are have been some cases in the history of this site where the original CIDP diagnosis was later found to not be accurate.

Don’t make the mistake of putting any one doctor up on a pedestal or holding onto a single diagnosis for dear life. After all, the doctor you respect may be wrong.

Personally, I always felt there was too much emphasis put on outside services such as p/t and o/t. Sooner or later, you’ll have to take what they teach you and do it at home.

Therefore, do it (p/t and o/t) on your own at home. Find some on line videos, go the library get a book, you get the idea. Live in the US? Find some county services.

find a way to follow the Doctors’ recommendations. It is of utmost importance to get proper treatment.

Still in the US? apply for Social Security Disability. Absolutely destitute? Apply for state aid. Medicaid or whatever they call it in your area.

Stay happy.

After one year- it’s probably not GBS anymore, by definition. Something from Hopkins medicine: “Diagnosis of GBS and CIDP is based on history, clinical examination and supporting laboratory investigations. These include electromyography with nerve conduction studies, blood tests and analysis of spinal fluid. In most instances CIDP requires nerve biopsy for histopathological evaluation.”

go to: http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/guillain_barre_and_cidp.html