Kelly the only possibility that I can conjure up is polymyositis.
Laurel

Kelly,

I’m sorry but I can not come up with anything.

Possibly sarcoidosis?
urlhttp://neuromuscular.wustl.edu/alfindex.htm#Surl
Could be one of many inflammatory issues…
W/Sarcoidosis the steroids helped a great deal, but tolerating them for a longer term requires finesse. By the doctor, that is.
Good luck!

more research ugh….

[FONT=”Microsoft Sans Serif”]would cytoxan be an option? often when the other stuff doesn’t work, chemotherapy is a good next option. it worked for me, pam h. and many other–

just a thought as it seems the aggression of his cidp is stronger than what ivig can do for him at this juncture. otherwise, and i don’t know if he is on them, is steroids– they can give a much needed boost when headed downward– just temporarily, that is… either oral prednisone or a 3 day course of solumedrol infusions– 1 gram a shot, minimum…

hope these thoughts help–
best of luck.
alice[/FONT]

I am so sorry that you are having such a hard time. It sounds like you two need a hoyer lift to be able to transfer your husband, and someone to teach you how to use it for transferring your husband. Is there a Red Cross loan cupboard with medical equipment that is loaned where you live? Or perhaps contacting the MDA Association for loan equipment? And then accessing some home support nursing help to teach you transferring is important. Where do you live? Maybe someone on the forum lives in the same area, and might have a list of resources that could help you. Let us know and we can all brain storm with you.
Laurel

Just before my mom died (from cancer) I was trying to figure out how I could get her out of her room and down the stairs so that she could be on the main floor and I could wheel her outside. There was no way we could lift her. I discussed it with the hospice nurse and she told me that the fire department could come to get her out of the bed and transport her downstairs. Free of charge. The only catch was it would have to be in-between calls. In your case, I bet they would have come immediateley as it was an emergency, being that he was on the floor. For your protection, you might want to get one of those back supporters for yourself, they velcro around your waist.. There is also a wooden board, called a transfer board. It works kind of like a bridge. You put it on say the bed and the chair and slide them on it. Easier said than done. But it does help. Not sure of your age, but if you are a senior, maybe you can get some sort of volunteer help. You can also hire care givers to come in and help, but it is very pricey, I paid $175 a day for my mom towards the end when she needed 24 hour care and I could not be there 24/7. You would probably only need a couple of hours a day. Try calling your insurance, usually there are case managers assigned if you have a chronic condition, they might know of something you can qualify for. The social worker at the hospital can help too. They are VERY resourceful. At the very least, maybe you can get PT at home and that would give you a little break in the transfering department.

Regarding the ivig not working. Sometimes people respond better to plasma pheresis FOLLOWED by ivig. As mentioned by Alice, steroids too can help arrest the crisis situation until you come up with a plan that works. Before the steroids are used or maybe even the pp, you might want to ask if they are sure it is not charcot marie tooth. Steroids are counterproductive for this type of md.It is a simple blood test, but it does take 2-3 weeks to get back. They may have already tested for it. Also, you do not mention how they re-dx with cidp. Was there a visible downward spiral after the second ivig? I only ask because 2 1/2 months is a short time to re-dx to cidp. It is hard to gather everything from the info you provided. How was he dx? Spinal? NCV/EMG? Is it possible it is still just gbs? That would be one explanation as to why the second ivig did nothing.

It is hard to watch and wait and fear the unknown ahead, but you will get through this. There are many combinations of treatment plans if others fail. As mentioned by Alice, cytoxan has given many great results. Although 2 1/2 months seems like an eternity, things are relatively fresh and it will take a bit of time to figure things out. Patience and trust in your doctor are what you need to make things happen. Good luck to you.

Ugh! When I first got sick I went through several courses of IVIG with no improvement too.

The treatment I got at Columbia-Presbyterian was the one that worked for me–60mg prednisone, 5 x plasmapheresis, and 5 or 6 x IVIG. Then after a few weeks we decreased the pred. I’ll probably be on pred for the rest of my life, but mostly I’m in remission. Only had a few relapses.

But different treatments seems to work for different people. I like the columbia approach–it’s like they just throw everything at it!

Good luck.

marie

Very best wishes.

Erin ~ how I wish I could help you. We lost our house 3 years ago and it made me so sad 🙁 And we lost our health insurance at the same time . . . GBS is a very expensive disease in more than one way.

It really can be very freightening when you don’t know how things are gonna work out. I will keep you in my prayer thoughts. I wish your dad well.

[COLOR=red]I regret that I am unable to help we are in a similar situation. 🙁 [/COLOR]

[QUOTE=renrose]Hi everyone,

Please [I]gently[/I] let me know if I am out of line in asking this question in the forum but I really am at a huge wall and I am desperate. I am about to lose my home. The past year with my dad being so far away has cost me an incredible amount of money. I was away with my new beau for about 10 days camping up the coast (low cost retreat from the past year of emotional upheavals) and I came home to a new and very expensive assessment from the strata council who runs my townhouse complex. I am humbly asking if anyone out there is able to donate or lend (it would be some time before I could pay you back) any money. I have asked the local churches but they don’t seem to be in a position to be able to help and so I am humbly turning to you.

Please forgive me if I am out of line I am just so scared of having a lien put on my house or worse losing it to a foreclosure, that I am asking everyone I know for help.

Sadly,[/QUOTE]

Erin,
You will be in my Prayers.
RC

Renrose,

I’m truly sorry to hear about your potential loss of your home. There may be a number of options for you depending on the type of mortgage you have. Also, as much as you don’t want a lien placed on your home, it will not cause a problem unless you are attempting to sell the property…you can include the cost of the lien in your asking price. If you’d like, send me a pm and I can go over a few of your options.

Be strong and well….

Tina