Reply To: New doctor finding him strange

January 22, 2014 at 5:47 am

Kirkly, you said your symptoms have gone on for a year. This would indicate CIDP or a variation that has similar symptoms. I think I would rule out RGBS because it is so rare and you have gone over a year. An accurate diagnosis is essential for the proper treatments to be prescribed. Diagnosis is costly, but probably not as much so as IVIg or PE. SCIg is a less costly alternative to IVIg because it can be administered at home and some patients can give it to themselves (no nurse required).

I was fortunate to have decent insurance throughout my illness, but I had some bills in excess of $50K that were not covered by insurance. The 1st lesson I learned was to negotiate the bill before accepting treatment. Make sure they will accept your insurance company payment as payment in full (after deductibles). If not, ask if they have a program for people with no insurance or financial hardships. Apply for the program or go to another provider. You may find you have to create a special trust that will shelter your assets before the program will accept you. Once that is in place, you may have to file for health care aid from your State. The ACA went into affect this month and programs such as Louisiana’s Medicaid have expanded their program coverage and eligibility requirements: http://www.benefits.gov/benefits/benefit-details/1270 .

It’s bad enough just having to deal with the disease itself, a financial hardship on top of this just complicates the whole process of getting the disease dealt with. I wish you the best in navigating both.

By the way, since you mentioned a lack of forum responses earlier, this forum has some undocumented etiquette that I think should be observed:
1. Search the other posts to see if your topic is already covered
2. Use a meaningful title for your thread
3. Add appropriate tags to facilitate forum searches
4. Do not double post (post the same message twice in one thread) or cross post (place the same message across several topics)
5. Act in a give and take manner; help others as often as or more than you ask for help
6. Do not post new problems on someone else’s thread and interrupt a topic of discussion
7. Write concisely and do not ramble
8. Give a little background before asking questions; structure questions to attract responses

I’m sure other forum posters would suggest additional behaviors, but these should help new folks here.

Have you ruled out Houston as a possible alternative to dealing with your non-responsive doctor?