New to all of this

What are my treatment options if I have NO insurance. I can get Medicaid if I meet a very hefty spend down. But I do not know if Medicaid covers IVIG treatments. IVIG is the only treatment my neurologist will consider. Without help, I have no treatment options.

You can have your Dr admit you to the hospital thru the ER & they will admit you and administer the IVIG for as many days as the Dr orders. Plus you can get physical therapy to help get your strength back. I did it for many years when I had no insurance. One you get Medicaid a home health nurse can go to your house to administer it. I hope this was some help. Try to stay positive!

Heather

Thanks, but my Dr wants guaranteed payment before he will do IVIG treatment. They are submitting my case to Medicaid to see if they will cover my treatment. I had physical therapy when I had drop foot and it improved it and my strength and balance. But now I'm almost back to using my walker. The pain I have is almost unbearable. I'm not doing well with this at all.

Heather R said:

You can have your Dr admit you to the hospital thru the ER & they will admit you and administer the IVIG for as many days as the Dr orders. Plus you can get physical therapy to help get your strength back. I did it for many years when I had no insurance. One you get Medicaid a home health nurse can go to your house to administer it. I hope this was some help. Try to stay positive!

Heather

My advice is to find a new Dr. It seems like he cares more about money than he does his patients. Medicaid will pay. I had it for a few years. Seriously think about finding a new Dr. Drs like that piss me off! Your first IVIG should be done in a hospital so they can monitor how you react to it. Good luck & keep us updated on what happens. You are in my prayers.

Heather

I saw a 2nd and 3rd neurologist. The second wrote in my permanent record that I was faking all my symptoms and this was in my head. The third said I had MS, but had no testing to back it up. She was at the University of Iowa Med Center. I would love to go back to her, but can't because I have no insurance. So I am stuck with the first neurologist I saw. He doesn't want to see me again until late November. But I'm not doing so good right now. I have no feeling in my feet and legs, except the agonizing nerve pain that I suffer. My hands are going numb and I have a creepy crawly feeling in my arms. I suffer from pain and pressure in my chest and back at all times. I take vicoden for the pain without much relief. I've been told that the answer from Medicaid could take months, not weeks like I was told.

Heather R said:

My advice is to find a new Dr. It seems like he cares more about money than he does his patients. Medicaid will pay. I had it for a few years. Seriously think about finding a new Dr. Drs like that piss me off! Your first IVIG should be done in a hospital so they can monitor how you react to it. Good luck & keep us updated on what happens. You are in my prayers.

Heather

Jordon call the neuro and leave a message that you are worse and can not wait. If it continues to get worse go to emergency room. Damage may be happening that can take a long time to heal. Prednisone is given also for cidp and it is cheap and possibly effective. Ask if you can try prednisone until medicare or Medicaid kicks in.

My dr. absolutely refuses to do steroid treatment. He says the side effects outweigh the benefits. He will only do IVIG. And he won't do that until there is guaranteed payment from Public Aid.

If you continue to decline I would find a different doctor until my benefits kicked in. It's way worse to be paralyzed. CIDP can relapse and remit. If your remitting wait for pa , but if your relapse continues don't wait. Make a note of what your able and not able to do. If it changes by the day or week you will know that your actively relapsing. In the meantime keep everything moving to your best ability.

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I have just sent a message to my dr. Tomorrow is their first day back from almost 3 wks. vacation, so I don't know when they will get to my message. I asked if I should find a new neurologist that would help me. I have been in relapse for awhile. I was the day he gave me my diagnosis and told me he could not give me the treatment because I had no insurance. He kept saying I was walking ok, if shuffling along is ok. He said the last emg/nerve conduction showed improvement in my right leg below the knee. Weakness above the knee and left leg and foot. We've been dealing with the right leg and foot for over a year and it's finally showing some improvement. My arms and hands are becoming involved. My slurred speech used to only be when I was tired, it's a constant now. I will see what they have to say tomorrow.

mabes said:

If you continue to decline I would find a different doctor until my benefits kicked in. It's way worse to be paralyzed. CIDP can relapse and remit. If your remitting wait for pa , but if your relapse continues don't wait. Make a note of what your able and not able to do. If it changes by the day or week you will know that your actively relapsing. In the meantime keep everything moving to your best ability.

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You did right Jordon. I hope it goes well today. Keep us posted.

What is happening, Jordan, are you receiving treatment yet? Hope things are improved for you.

Public Aid approved 1 IVIG treatment a week for a year. I started treatment October 4th. Got phlebitis and skipped the following week. Had treatment the 17th and 24th, everything went fine. Then phlebitis again with treatment on the 31st. I requested a pic line. My dr. made a referral to the surgeon for a port. I get it put in this Friday, Nov. 15th. Haven't noticed any improvement from the treatments. Actually, I am worse. I don't see my Dr. until the 26th.