Spouse and wife dignosed with CIDP

    • Anonymous
      May 26, 2008 at 6:25 pm

      I have been dignosed with CIDP. My spouse has had CIDP for about 2years now. I have jerks unvolintary movements. Is this what comes with this diease. I stay in alot of pain, I have had 5 IVIG’s but I just got the bill and 1 day of IVIG was over 20,000. Is this about the right amount for this type of treatment. I don’t know about some of you, I am scared of what is to come with this diease, especially with me and my spouse, we have 3 children. My spouse has applied for disability and they have denied him. He also has diabetes, and other dieases. The doctors say, they don’t understand why he has not gotten it because the evidence is there.

    • Anonymous
      May 27, 2008 at 2:28 am

      Hi Suerein Welcome to The Family, Both of You! Denials are common, don’t give up, if needed there are attorneys for refiling. Keep up the fight don’t give up! I get disability from my state job but ss denied i was disabled, of course they had my problems wrong, my can dos(of which I have very little) were wrong and my can’t dos were all wrong. I will be refiling shortly. Yes ivig is expensive. Have you tried other treatments? Wow 3 kids and both of you are battling this nasty syndrome, I fel bad for you both. I have 2 kids and I don’t know what I would be doing if my hubby came down with anything serious. Please take care of yourselves.

    • Anonymous
      May 27, 2008 at 5:47 am

      Hi Suerein

      I posted a reply last night but don’t see it here so wanted to repost. If you look in the News and Announcements forum, a lady posted there yesterday. She has put in some sites for disability, back to work programs, etc. She is a Disability Navigator…she helps people like yourself wade through the red tape. Please have a look at her post. There may be something there to help you out and you may have access to a navigator in your area.

      Good luck.

    • Anonymous
      May 27, 2008 at 11:04 am

      I have had CIDP for over 5 years now and have had a lot of different experiences with how my IVIG has been covered. Now I receive my IV’s from a company called Accredo. They come to my house or my work. I applied with them to have my portion of the payment waived. They submit to my insurance and my insurance pays 80%, then Accredo waives my portion. They have really been a god send to me because there is no other way that I could afford my treatments. Maybe you could try to find something similar in your area. Accredo might even be accross the country, I’m not sure. Hope this helps!

    • May 27, 2008 at 11:23 am

      Hi Sue,
      Yes, Acreedo is throughout the country. You can also get the ivig direct through gammaguard or gammunex. They will set up nursing to come to your home and bill insurance directly. If you use a middleman (infusion company), it cost more. For example, through our company, we pay $128 a gram, if we were to use gammaguard direct, they were $68 a gram a couple of months ago. In the future I will consider this to help keep the $5 million lifetime benefit last as long as I can. For now, my 11 y/o loves his nurses and is comfortable after some lows. I can’t change now. Gammaguard also offers a program called gamma assist, where you fill out forms for all of the ivig you have used while insured, and if in the future something happens w/ insurance, they give you voutures for a certain amount of ivig free.
      If you have insurance, you cannot worry about the cost, if there are high deductables, work with the hosp or agency that you owe, as mentioned above, some agencies are willing to help.

      With three children and both of you sick, you have “NO” other option but to fight this aggressiveley. Ask questions here, there are many kind people that will help and offer suggestions for battles they have already won. Good luck to both of you.
      Dawn Kevies mom

    • Anonymous
      May 27, 2008 at 11:44 am

      Hi Sue and welcome to the family.

      I navigated the disability process and can help you if you want. There are lots of programs out there to help until SSI/SSD approves.

      Here is a great site that has many links for help in many areas, prescription assistance etc. [url]http://www.needymeds.com/[/url].

      If I can be of any help with your SSI/SSD or anything please email me anytime through here.