try this:

October 11, 2010 at 4:09 pm

try getting in touch with the National Organization for rare Diseases. they list GBS as one of their “orphan Diseases”. They may be able to help you get some information and insight into the situation: here is the number:

203 744 0100. They are located in Connecticut, but it is the National Organization. also, sign up for the newsletter and bulletins.

Try this

September 2, 2010 at 12:10 pm

Amitriptyline…an old-school “tricyclic” antidepressant…works very well for sleep, and also helps nerve pain. It’s used quite commonly; I’d ask about it. I was given a scrip, was very hesitant to take “another drug”, but it really works well for sleep, and, at least for me, has very little “hangover” effect. Make sure you start on a very, very low dose, though…like 10mg. From there you can always go up…and that dose is only about 10% or less of the dosage used for depression. I can’t imagine how sedating it would be at the full dosage! But, in these micro-doses, it really helps with sleep.

Hope it helps.


try this

May 27, 2010 at 3:07 pm

quote: “Insurance Gaps

The GARDian program ([url][/url]) may also help patients who experience insurance gaps and those who have no insurance. This assistance is available to qualified IVIG patients on any therapy, including newly diagnosed patients and those who are not currently on GAMMAGARD therapy. The program provides GAMMAGARD therapy at no cost to those who meet the program’s requirements.*
*Financial and residency requirements may apply. Please contact the GARDian program, 1-877-655-GARD (4273) for additional details.”

try this:

March 3, 2010 at 9:12 pm

try contacting the national organization for rare diseases. gbs is listed and they just had an informational event this weekend. there is a chapter in danbury connecticut on kenosia avenue. i havent had a problem with the insurance company yet. but its early in the gbs mess so far. i was sick from july – oct and now have drop foot, paralysis, fatigue, and plenty of pain, just like everyone else. it is a nightmare. my g.p. has no answers and i dont really get why i have to keep seeing him other than to get rx for physical therapy. the neurologist doesnt want to see me past the inital post hospital appt. i dont get that either. i guess the coma, trach and paralysis didnt warrant follow up. the only problems i had so far with the ins. co was that they didnt want to pay for in hospital pt so i was shipped out to a sub acute care facility that was a perfect nightmare although it was listed as the best connecticut has to off and then ins. wouldnt pay passed 2 weeks. there is always a patient liaison or the social worker at the medical facility or hospital where you received care. they should be talking to the ins. co about the “rare disease ” staus of gbs and the kind of ongoing medical care you require and helping your fight for coverage.