I was also diagnosed in November 2016 after a long time of not knowing what was wrong. I had been hospitalized with an infection when I lost the ability to walk. The worst part for me is that I could not get any of the doctors or nurses to listen to me. They just said I was not trying or having a reaction to the medications.
The hospital sent me to a nursing home to recover from a skin graft, not addressing the not being able to walk issue. My insurance forced my discharge even with the nursing home doctor telling them it was unsafe to discharge me.
I went home, being able to walk a few steps with a walker but I found myself unable to stand up. My housemate called for an ambulance to take me back to the hospital, but they called the paramedics. The paramedics insisted on seeing how well I could walk. I said that they would need to hold on to me, but they didn’t. I dropped to the floor breaking my ankle and leg…
Back in the hospital, I hoped that they would try to figure out why I couldn’t’t walk. They brought in a neurologist who decided I had something, but again my insurance insisted that I be discharged before he could do any testing. He said to give him a call when I was given permission to stand on the leg.
That took three month, as the ankle was splintered. When I finally got hold of him, he wouldn’t take my insurance, so it became a struggle to get into another neuro. That required a referral, and it took me took me four months to get that appointment and another three months for the new neuro, which took me to August of 2016.
Then all kinds of delays. The insurance didn’t want to pay for the requested blood tests and MRIs. The EMG and NCV test were scheduled for tSept. 9th but not done until late October. By the time I got back to the Neuro at the end of November, he diagnosed me with a Demyelinating Disorder, saying it was probably CIDP and suggested that I go on IVig.
That was the real battle. I was referred to a home infusion service, but I am in a nursing home sic I can,t walk and I have no family to help take care of me. The nursing home refused to let the infusion service come in the facility. The insurance agreed to allowing a five day hospital stay, but the neuro said the facility physician would have to admit me.
Then the neuro screwed up the IVig order, which cause the insurance to deny me. He had forgotten to tell them how much I weighed. Finally got that straightened out and got the doctor to admit me. I arrived at the hospital and they demanded $1400 from me to stat treatment. Thank goodness they took my credit card.
So I had the IVig for five days with the worst part being the itching. They also did a spinal tap while I was there. The spinal did NOT confirm CIDP. That was March 29 - April 2.
I get back to the nursing home to find out they had given my bed away, which was a stresser I didn’t need. After a battle, I got my room back and the good news that my insurance was picking up the bill and I was going to get physical therapy. I had been paying $7500 a month. Things went great for two weeks until the PT people tell me they were cancelling me because “all my goals had been met” to which I screamed that I still couldn’t walk and I am still here.
I got the PT restored but the IVig had worn off as well as five days of Prednisone, which gave me some energy and less numbness. Mid-May, I had six days of Solumedrol, which helped, but the effects have again worn off. My PT has been cancelled again because they feel I am not cooperating, but they don’t understand CIPD or the weakness.
To make matters worse, my broken ankle healed with a contracute and the orthopedic doctor last month suggested that if I want to walk, I should have the foot amputated because it won’t go flat. This is because a suggest surgery last August was refused.
So I have been neglected by doctors and abused by the insurance company. I tried to get a lawyer to see if I could sure the paramedics, but four lawyers refused to take my case.
So except for the two weeks my insurance paid the bills in April, I have had to pay between $7500 and $9000 a month for my care. I am running out of money. I have been referred to the IC Irvine Neuromuscular Center and am half way through the six month wait and will be seen by them mid-August. I hope my money doesn’t run out before then.
I am afraid that treatment delays will prevent me from ever walking again. If I can’t walk, I can’t go ho,e. At home, I have my 91 year old housemate who is a wonderful guy but he can’t take care of me. Living in a nursing home is a living hell and I want out. I see the neuro next week, but he doesn’t seem to want to treat me until the Neuromuscular Center sees me. I am very frustrated.
Cam - you are so right that no one understands. I can’t even get medical people to understand the weakness and the pain. I want to participate in PT, but I hurt so much that I am in tears in the middle of the night and can’t sleep. I have spots on my body even the slightest touch is very painful. I was very numb until the steroids, but returning feeling is just pain. With no family to fight for me, I am just being neglected. I go back to the neuro next week. If he doesn’t order more treatment, I don,t know what I will do. The steroids have raised my blood sugar to the point of needing insulin, so something else needs to be done.
Just try not to get too frustrated, but I can tell you that is the hardest part when people don’t listen and try to understand.