Reply To: Dealing with more than one immune disorder

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.