Hi all, as you may know I am new to CIDP recently diagnosed on April 17th, 2015. I live in Utah with my husband but we relocated here for my work and we are away from our families. With all of this happening of course our first thought is to get back to California where we have more support but I am so very scared now that we are just starting on this very long path. I am on ST disability right now hoping to get back to work soon. I have been out since May 4th and just now received the first disability check. So I started Prednisone as the beginning treatment on May 4th and just had a follow up appt on June 2nd. We discussed the side effects I am experiencing (headaches, dizziness, insomnia, shaking, and shortness of breath) and we came up with a new plan that I was in no way ready for. I had no idea that treatment plan had to include a immune-suppressant that I will most likely be on for the rest of my life (Azathioprine) along with either the Prednisone or IVIG. Currently Dr is tapering down the Prednisone 10 Mg every two weeks until we reach 35mg.
He is submitting for the IVIG but I am one of those that by the time the doctor ordered my lumbar puncture I was either not in an active flare up (4 months since initial main flare up but I was in a state of atrophy not able to use extremities) or I am one of those that doesnt have elevated protein levels. So I know getting the IVIG approved is going to be a fight. Which really brings me to the reason for this posting.
I want to get back to family, to a support system. I will hate leaving my job and my coworkers but I need the support of my family and so does my husband. My husband more than anything wants to go home and I want to do that for him. So our lease in our rental home is up at the end of July. We have been trying to actually raise money to help us move to a safer one level story home because I cannot be mobile in our current home (4 stories and bathrooms are on top level or basement). I know my husband would love to get home to Cali instead of renewing the lease here but Insurance has me scared. I know I need him to get a job and establish insurance before I can even give my job up here. I dont think that Medicaid is an option for this type of illness and treatments. Working in the Medical field myself (Durable medical equipment, Oxygen, Sleep Apnea field) I know that Medicare requires you to be on Disability for 24 months before you can get Medicare (unless 65).
What happens with your current treatments are you considered pre-existing and new insurance wont cover things??
Do you have to start at the beginning with no treatment what so ever and get approval for the IVIG all over again??
Has anyone been through this or something like it?? I know there is more I should be asking or thinking of but I dont even know where to start.