A follow up to my post above.

I did a search on the topic and I see that some people are getting the neurologist and I V I G costs covered by way of having Medicare supplemental insurances.

It looks like I will need to research this in full before I think seriously about retiring.

This doesn't seem to have a clear answer. IVIG is very expensive, some say $15,000 - 20,000 and since medicare is not a single program -- there are advantage plans and other variations, you probably need ot ask the provider about it -- as they will know what you have.
IVIG is usually not given unless certain conditions are met as it is so expensive and often needs to be repeated monthly.
One site that gives some of the guidelines
https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf

Good Luck

I have had great difficulty with this issue. I have Medicare Part B,
Medicare Part D (prescription coverage) and a supplemental plan.
My neuro wanted me to have IVIG monthly at home and the out-of-pocket cost is so prohibitive that I ended up in the hospital twice within ten months and had five doses of IVIG each time. My neuro still wants me to have once a month ivig treatment and am trying to figure out if it is feasible at all financially.

As far as changing to Medicare, make sure you get a really good Medicare Part D coverage. I had a dual problem with the copay- the nurses services falls under Medicare B (and my supplemental)and the IMMUNOGOBLULIN is considered a medicine so it is covered under Medicare Part D. This means I would have a copay of roughly $500 total (nurses services and infusion) once a month for one treatment at home for six months. About half of the $500 is for nursing services and half for immunogogulin.

I know this is a lot of detail but I just want to make sure you get the right coverage so you don't run into the problems I have had. I would get as much advice as I could (including paying for expert help if necessary).

I was diagnosed with MG 26 years ago and this has been the biggest hassle. Who needs this stress when you can't breathe, chew or talk normally? Good news - I was in remission for roughly 10 years after taking Cellcept so I am praying that will send it into remission again. Have been taking it since last summer so hopefully this last round of ivig is all I will need for some time.

If not, I guess I will bite the bullet, pay the copay and adjust my retirement plan. (I was already retired when it came out of remission so I didn't even consider mg in my plan. Poor planning on my part I guess but just really thought it would continue to be in remission and costs were always covered completely when I was working and on traditional heath insurance.

Thanks jettybo for the reply.

I was just in the hospital from March 11th through the 16th. I received my first IVIG infusion during that time. ( 5 infusions over 5 days ).

I am now scheduled to go into a local infusion clinic 4/18 through 4/20 for 3 more days of IVIG infusion. I am still working and have Blue Cross and Blue Shield insurance through my employer but it still only pays 70% of the cost up until I meet the maximum out of pocket for the year which I have already reached. My insurance will not pay for home infusion.

I turned 66 last month and retirement had been in my thoughts but its not going to happen for a while now with this illness. That's why I asked the question as to what Medicare covers. Thanks for such a detailed reply.

Would it be OK to write you direct with a couple of questions?

Thanks
Steelplayer68

I'm only 63 but on Medicare for another Disability. There are a few coverage issues since I'm under 65. I live in northeast. NO supplemental insurance here let's you walk into an office and talk. They all say go to group info.Blue Cross and ct care had salespeople to come to your home no charge.I had list of all meds,drs,hospitals and possible treatments done. We felt no pressure from either,both did comparison $,etc. I went with blue Cross. ,she showed me that due to age I was only eligible for level whatever for part b(drs fees) part d for drugs. .start now with human resources if you can perhaps they can help ?how long can you carry current at what cost.. it is a tough road but very necessary. Hope w/e was good.