The only family I have is a brother in Oregon who has enough problems of his own. I have a nurse advocate with Blue Shield but she can only act on doctor’s orders. BS did pick up my nursing home bill for a couple of weeks after I got out of the hospital in April for IVig.

I only get out of bed for showers and doctor appointments. I don’t have my own wheelchair, so I have one to use that no one else wants. I just purchased a leg brace and have started to stand, but it is very painful. When the ankle was broken, I really never had much pain due to the numbness, but standing the last few days has caused some intense pain and from what I can tell it is at a point where a plate and screws were put. I had no idea because I couldn’t,t feel it until a couple of days ago.

I just turned 63 a couple of weeks ago, so I am about 20 years younger than most of my fellow residents. Not much chance of socializing. Most of my friends were from work and I have only had four of them visit me in the 21 months. I retired as a computer technician less than two months before I got sick because my eyesight was getting so bad I could not continue.

On the good side, when I applied for SSDI, I got immediate approval. I am hoping that my situation gets better after the visit to the UC Irving Neuromuscular Center. If they confirm the diagnosis, the battles might get easier. Next neuro visit is June 15 so nothing will happen until then.

Blessedmomof3 –

If you are asking me why they didn’t start IVig for me when I was originally in the hospital, it is because I could NOT get any of the medical staff to listen to me about the dizziness, numbness and weakness I was experiencing. I was discharged to a nursing home to recover from my skin graft. The doctor for the nursing home even called to insurance company saying that it was irresponsible for them to discharge me when I was clearly too weak to walk or take care of myself.

I paid for three additional weeks to try to get back to walking when I finally discharged to got home, which lasted about five hours. Even after breaking my ankle, a neurologist was called in, but again, the insurance company insisted that I be sent again to a nursing home with the neuro saying that I had something, but he wasn’t being allowed to pursue it.

After I was considered weight-bearing on the ankle, I asked for the nursing home to make an appointment with the neuro because I was being called uncooperative in participating with my physical therapy by not walking when asked. Since I was so dizzy and afraid of falling and hurting myself more, this was true.

I was informed that my insurance was cutting off Mersin home care and PT and still hadn’t seen a neuro, I called the neuro who had seen me in the hospital and was informed that they had told the SNF that he would not see me because he was no longer accepting my insurance. So I protested at my discharge meeting that not only were they refusing my request for a neuro appt, they hadn’t ordered the leg brace for my ankle that would allow me to walk. The leg brace arrived the week after my insurance and PT ran out, so I had the leg brace but no one to help me walk.

So now I was on private pay again and still no neuro appointment. So I decided that upon leaving care, I would need a primary care doctor, so I made an apptment with one for May31st, my target date for going home. Due to a rug resistant urinary tract infection, I didn’t make my target, but I did keep the appointment. He gave me a referral to a neuro. Th SNF “lost” the referral three times before finally making the appointment for the end of August 2016. I checked out of their facility at the end of July because of their continued non-care of the UTI and foot.

I had two more hospital stays for the UTI and ulcerated foot without any neuro consult being allowed at the beginning of August and was placed in my current SNF mid-August

When I got to the Neuro appt, I was told that the previous SNF had cancelled the appointment (vengeful bastards) but the dr. would see me..Then the messes started again: insurance not wanting to pay for blood tests, MRIs and delays in getting NCV/McS done. Finally in November, I received the CIDP diagnosis with a recommendation for IVig.

That started a new batttle. It was recommending that an infusion service come to my SNF to do the IVig, but my SNF refused to let them come. Since I can’t walk, the a,bulatory infusion centers refused to take me. The insurance agreed to five days in the hospital, but my neuro said my primary care doctor would have to admit me, and the SNF doc was not responding to my request. Then the IVig was denied by the insurance because the neuro screwed up by not giving them my weight for the proper dosage.

Finally March 29, I was admitted for five days of IVig. Nothing bad other than itching, but there is no further doses scheduled.. I was given Prednosone from April 19-23 with good results, but they wore off. I started a MedrolPak this morning, hoping to get strength back and reduced numbness.

New ankle braces have been ordered and I am hoping to be able to try walking again in the next few days before the Medrol wears off. I am hoping that once UC Irvine Neuromuscular Center confirms my diagnosis that Ican get IVig on a regular basis.

Sorry to go on for so long, but this has been a long battle and I want to make sure that those who are being offered treatment right away don’t delay. I ,at be facing a life of never walking again because of treatment delays. Don’t wait for it to get worse.

FYI, my insurance is Blue Shield of California PPO which seems to think that killing me off is cheaper than paying the bills.

Sandy-

At times I think one of our biggest problems is dealing with the doctor’s egos. I have gone crazy for the last two years trying to get answers and have the doctor’s communicate with each other, but I have had little success.

I am in a nursing home and their doctor should be coordinating everything, but I don’t think he has the slightest idea of my diagnosis. This last timeI saw him, we had a disagreement over his wanting to treat me for high potassium with a medication that could have possibly killed me, when I was disputing the blood test results because of the way the blood was taken (tourniquet left on too long and very small needle used) and he backed off but was angry that I had researched the medicine and discovering that if it was taken with the artificial sweetener Sorbital, which is a major ingredient in one of my medications, it could cause intestinal necrosis. He hasn’t visited me since.

I see an ortho surgeon tomorrow about correcting my deformed foot, but blood tests are showing severe anemia. I have been asking for them to look into this because if surgery is offered, I don’t want a delay because of my blood.

I have four different online apps from my doctor’s that display my visit and test info. It would really be great if there was a way to link all of this information together so everyone could see all of the test results. My last blood and spinal fluid are on the hospital app, my neuro has a different one, my two eye doctor’s use the same app and I have been set up on the IC Irvine Neuromuscular Center’s app even though I don’t see them for another three months.

Every time I see a new doctor, I dread filling out the paperwork, worrying that I might be leaving out something important. Here is a list of my conditions:

Diabetes Type II 9/15
Necrotizing Cellulitus 9/15
Cataracts 9/15
Retinal Bleeding 9/15
Congestive Heart Failure 10/15
Fractured right ankle, surgery 12/15
Antibiotic resistant urinary tract infection 5/16
Ulcerated right foot 8/16
Polyneuropathy 8/16
CIDP 11/16
Autonomic peripheral neuropathy 4/17

I lost the ability to walk five days after being hospitalized for the cellulitis but I could not get anyone to do anything about it. When in rehab after the broken ankle, my inability to walk was considered to be self limiting and my insurance cut off care and rehab. I am finally getting PT again after a year of being cutoff, but they have no idea what to do to help me. I try to explain, but they don’t listen.

Listening would solve a lot.

Bryan

Thanks for the number. Just have to get the neuro to prescribe then figure out how to get the infusion done. Trying to find out if my insurance will cover SCig, since my SNF won’t allow IVig in the facility. Shouldn’t be any harder to give than insulin, but if no FDA approval, the insurance probably won’t approve.

You certainly would not want to place her in a facility that does not have experience in dealing with GBS patients. I know that some places are considered a “Sub Acute” facility, which would deal with more seriously ill who might be on a respirator or require tube feeding.

A co-worker who had GBS was sent to a rehab place in San Pedro that she said was excellent. I am in a SNF in Bellflower that had decided to IVig infusions onsite so I had to go to the hospital. I was previously in a place in Long Beach that provided more services, but this was before I got the CIDP diagnosis. I left there because their staff doctor was sloppy with his prescribing, not checking my allergies before giving antibiotics and ignoring my complaints of weakness, numbness and dizziness, which led to a one year delay in my diagnosis. After discharge and rehospitalization, I needed to be placed in another SNF and I was turned down by every facility in Long Beach (except one that cost $11,000/month) because this place had me “blackballed” according to the hospital social worker, so that is why I am in Bellflower.

So they can turn you down because they think you might be too much trouble.