I was diagnosed Jan, 1984.
Things went along pretty good until 1997 when I had a blood vessel burst in my eye and I found out that I had retinopathy. I went thru a bunch of laser surgeries for that, the last of which was the spring of 1998. I was at the eye doctor in Feb and I told him about the Joslin study saying that the magic number seems to be 17 years and I have been at 13 without trouble from retinopathy, he said that is great unless you are the one that doesn’t fit into the pattern. Burst a girl’s bubble here!
It was probably around 98 that I also started having some problems with neuropathy. I started taking Advil for the pain and that ate the lining of my stomach. I had to go thru all kinds of heart tests before they would do the stomach ones. Although no one mentioned the word gastroparesis, the report from the one stomach test mentioned that there was food in my stomach even though I had fasted for over 12 hours. In 2003, I really started having problems with the gastroparesis and that is when they did the gastric emptying test. Since I found the DOC, I have learned how to manage the gastroparesis and get more normal BS readings – no doctor was able to help me with that. Although I can’t eat salads every day like I used to, I am able to eat them on occasion without problems. I believe Bernstein said it was something like 14 years for his to reverse so I am still working on doing that!
In 2003, I had my first trigger finger – I had 2 that went close together & another 2 that I had surgery on in 2008. I had one in 2006 that I never got fixed – if you wait long enough, the pain does go away. It is my thumb so the popping doesn’t bother me much.
When I had the first trigger fingers, the orthopedic surgeon told me that I had Dupuytren’s contracture because I had a little dimple in the palm of my hand. I thought he was nuts at the time but I do have big lumps in my hand now & curvature of the fingers so he was right.
I have had large amounts of protein in my urine since 2003 but have never had any other indications of kidney problems.
In 2005 was the big one – I had dry cracked skin that ended up getting infected. I did what I was supposed to do and called my doctor on day one. Unfortunately, I also moved into the land of idiot doctors and when I told the new doctor some of the problems I was having that were signs of infection, he ignored it. I landed in the hospital and found out I had osteomyelitis, which is an infection in the bone. While in the hospital,, I picked up MRSA. I changed doctors and after 2 rounds of IV vancomycin therapy, the doctor announced my infection was gone and put a wound vac on my foot. I later found out that the culture he did & the MRI both stated I still had an infection. The wound vac was not supposed to be used with an infection and it turned my bone to mush.
I changed doctors & went one in Pittsburgh several hours away. The new doctor ended up taking out the bones in the inner part of my heel. He did 3 total surgeries and put a bone graft in my foot. I also did 12 weeks of hyperbaric oxygen therapy. It literally was a 2 year ordeal from start to finish, but I still have my leg.
I did the HBO in late 2006 and I started having some vision problems. They said it would take awhile after you finished HBO before that cleared up. My foot finally closed in Mar, 2007 and by then, I had my fill of doctors and did not go to the eye doctor. I know I should have but I had 20 months of seeing a doctor every 1-2 weeks at most and 4 months of seeing at least one doctor every month. I had almost 20 weeks of home IV antibiotic therapy, home nurses coming in regularly, people helping with dressing changes every day, several weeks in the hospital, 3 weeks of HBO … you get the picture, I needed a break!
I went to the eye doctor in 2008 and found out I had cataracts. If you already had them, the HBO can make them worse. I had cataract surgery & my vision really improved. I am 20/40 in both eyes. Prior to surgery, my good eye was 20/400. My right had the most problems and they did not even assign a number to that. Because of the laser for retinopathy, I have no peripheral vision at all in that eye and can only see things directly in front of me. I only use OTC reading glasses, so my eyes really have improved!
I have also been told that I have autonomic neuropathy. One of the main things with that is BP problems. The BP problems actually started in 2006 but got really bad in 2008. Gastroparesis is considered one of the problems with autonomic neuropathy. My eye doctor mentioned that my pupils are very slow to dilate, which is another sign of autonomic neuropathy. I also have gustatory sweating, which is your face sweats when you eat – that only happens if I eat certain foods so I try to avoid those foods.
I felt like I wrote a book, but you asked! It seems like 2008 was when the autonomic neuropathy got really bad and that was also the year that I started tight control so that makes sense.