Reply To: Recommending IVIG…What to do?

May 12, 2017 at 11:44 am

Liam-

Take the IVig! My neuro explained that many conditions can be helped by taking it, so not delaying treatment is the best thing you can do..

I am an example of how bad it can get of treatment is delayed. I lost the ability to walk when I was hospitalized with a skin infection. I couldn’t get the doctors to pay attention to me and do anything about it. My diagnosis was delayed over a year, and I have spent almost all of my savings for nursing home care. When trying to get help, the paramedics were called by the ambulance service I called to take me back to the hospital and they insisted on seeing me try to walk. They drooped me and shattered my right ankle, which took forever to heal. But due to the nerve and muscle damage, the foot developed a contracture. I was told on Tuesday that the only way for me to walk again is to have the foot amputated and have a prosthetic foot replacement.

At this point, I am still too weak to walk, but I am starting a second course of Prednisone today. If treatment had been started earlier, I would probably be enjoying life at home, instead of paying $7500 a month to be totally miserable and waiting three more months to be seen by the Neuromuscular center at UC Irvine.

Don’t let the damage become permanent!