Anyone care to talk about Diabetes complications?... it's usually a taboo topic (downer topic) on most diabetes message boards but... I'm interested in hearing how long PWD have been living with their complications. It just might inspire someone newly diagnosed with a particular complication that it's not an immediate death sentence (like I thought mine were).
2002- (NPDR) I was diagnosed with "mild nonproliferative diabetic retinopathy." I have kept my blood sugars in a semi-normal range and luckily there has been no progression. It's been 9 years since my diagnosis.
2002- I was diagnosed with "Mild peripheral Neuropathy" in my lower/calf muscles. I thought I was literally going to be dead within six months when the Neurologist told me the EMG/NCS test result were positive for mild nerve damage. Here I am 9 years later with no progression, *smiles*....oh, and living a fantastic life.
I would love to hear from other PWD that have been living with complications (and for how long etc...). Don't be shy...
Thanks.
Glad to hear it Danny!
I was dx with mild nonproliferative diabetic retinopathy in my left eye around 2007ish (about 15 years in). 4 years later, tighter control, no progression and still nothing in the right. No vision changes at all. Not a long time, but still.
As I think most of us do, I struggle whether each and every little ache or pain I get is diabetes related, normal wear and tear on the body, or something else entirely. What were your first symptoms of neuropathy? Not that I need another one to obsess over (I swear I can âfeelâ my kidneys screaming when Iâm high) but just curious anywayâŚ
I canât speak from direct experience here (I am type 1 of 21 years with no complications), but you might be interested to know that Type 1 diabetic Dr. Richard Bernstein (author of The Diabetic Solution) successfully was able to start reversing his complications all by maintaing healthy low blood sugars by eating a proper diet. Heâs an older man and was diagnosed back in the day when blood sugar meters werenât yet heard of. His story is really amazing, and his recommendations really do work. If you wish to slow/stop/possibly reverse the progress of your retinopathy and neuropathy, I definitely recommend his book (itâs available here on Amazon). It changed the way I handle my diabetes forever. Best of luck to you.
Very interesting stuff. I think he does comment somewhere in the book that if you have a higher daily average, that you should drop it slowly over time. Perhaps thatâs just in the revised version that I have, and not the original? Good food for thought though. I know his book changed the way I handle my diabetes forever, and think every diabetic deserves to have his knowledge. Every one of us needs to tread so carefully though. I think itâs great that your symptoms have not progressed, and hope that it stays that way for you.
I too have retinopathy but it has been stable for the last 30 years with good control. My teens & early 20s are most likely to blame for the complication but once I took control everything made a turn for the better. I have a couple doctors who blame diabetes for my coronary artery disease but my endoc says ânoâ, my family history is to blame. I tend to agree with him because I did have such good control at diagnosis. Either way, living with diabetes practically my whole life (48 of 50 yrs) kinda makes it seem like the normal thing to do. I take care of myself because I donât want to lose my kidneys, eyes, limbs etc. Itâs pretty much all in my hands (IMO), so to speak.
Late 2007 - I was diagnosed with mild proliferative diabetic retinopathy in both eyes. I was immediately started on a series of laser treatments. It scared me and I gave up MDI for a pump, and brought my A1c from 10.4 to 6.5 in 3 months. This (against all logic) caused my retinopathy to worsenâŚ
Late 2008 - Diagnosed with severe proliferative diabetic retinopathy. I continued laser treatments. By April of 2009 it was clear I needed a vitrectomy, which I had done April 8, 2009. Since then that eye has been EXCELLENT. However, my other eye continues to hemorrhage every once in a while, if I strain myself or work out way too hard. I am still trying to deal with my decreased levels of peripheral vision, color vision, and depth perception caused by my dozens and dozens of laser treatments. I believe my eyesight is improving somewhat and believe I may be ready to start driving again soon!
Yes! My retinopathy got 10x worse when I dropped my A1c about 4% in 3 months. I was never warned to drop it slowlyâŚIt wasnât until after the fact that my retinologist 'fessed up to knowing this could be a problem!
Letâs see here⌠the main thing that has went wrong with me is gasteroparisis (where you donât digest your food as quick as ânormalâ ppl. Iâve had lazer surgery on my eyes too but canât remember what it was called nowâŚsomething about diabetic retonopy⌠but that has been awhile now. I guess Iâm really lucky!
10 years ago I had proliferative retinopathy which led to a detached retina in one eye. I had laser and a vitrectomy and retinal surgery. Today my eyes are 20/20 and 20/30. I lost a small amount of peripheral vision in the eye with the detachment. After the surgery, I had to lay facedown, unmoving, for 8 days. Well worth it.
In October of 2010 after surgery for ovarian cancer, I went iinto respiratory failure and was not expected to live. My entire body began shutting down, including my kidneys. Then I slowly got better. Then two weeks later the kidneys crashed again and did not come back. I was told this was probably not due to db because it was acute, whereas diabetic kidney disease takes years to progress. I have been on dialysis since the end of last year. So in part, my worst fears have come true. But Iâm still kickinâ.
I donât tell alot of my complications b/c I tend to dodge the specilist and my dr knows it.
Itâs been around 5 years since my eye surgery. Nope my eyes are slowly getting old! LOL! Right now I have 40 /20 vision in my eyes. Not that bad I can live with it thanks to glasses and otherâs around me. I just waited to long to have anything done. Sometimes though the glasses donât help me at all. Thank goodness for my kids and g-kids (along with the husband that drives me crazy) at that time.
I have gastroparesis. This was diagnosed shortly after my diabetes diagnosis, so my endo theorized I had high BG (probably LADA) for around 5 years before DKA. My fasting was normal from annual blood tests, but I must have had serious postprandial spikes. How I wish A1c tests were part of standard blood panels for early detection.
Thinking back as a child, my first complication was the urination, then IBS, then what I realize now to be gluten intolerance. In 2005, very shortly after my official diagnosis, I developed full blown cataracts, in both eyes @ the age of 38. I ended up totally blind within about 6+ mo, during the last stages. However, thank god, I did managed to get both my surgeries done, and now I can see better than I ever did!! I had no complications from the surgeries, (probably due to good glucose control). My new clear HDTV vision was a bit of an adjustment though⌠LOL. You would never know I have implants in them unless I told you. The surgeon did a beautiful job.
Yogi
Yes, Iâm a first grade teacher! Thanks for your kind words.
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 doesnât fit into the pattern. Burst a girlâs 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 â no doctor was able to help me with that. Although I canât 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 â 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 â if you wait long enough, the pain does go away. It is my thumb so the popping doesnât bother me much.
When I had the first trigger fingers, the orthopedic surgeon told me that I had Dupuytrenâs 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 â 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 â 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.
Diagnosed in 1959, first âcomplicationâ was this year at last eye exam. The doc said that he could see negligible retinopathy in my right eye. He has been my eye doc for over 20 years so has seen me regularly over that period.
I never check my BG until I started pumping about 6 years ago and ate all day long with one injection a day (except when I was a teenager). Which leads me to believe that complications are genetic more than environmental.
Thatâs great Danny! It definitely is a great discussion to have! I was curious because when itâs humid out my feet will tingle after a long run. Itâs actually not uncommon among other (non-D) runners Iâve talked to, but still the word âneuropathyâ is always in the back of my brain! Cheers to re-innervation!
Hey Kari. Did your doc ever tell you what exercises you should/shouldnât do? The exercise physiologist at Joslin told me that maybe I should avoid lifting heavy weights. My optho said she didnât necessarily make any recommendations like that until things get to a certain point. I donât really do many weights anyway, but it makes sense that any exercise causing strain could be an issue.
Youâre a trooper, Kathy! I canât imagine having to lie facedown without moving for 8 days. I can barely sit still for 10 minutes. All I can say is that someone still wants you to be here! Keep it up!
Hey Gerri! I think this is one of the biggest problems that LADAs face. Like T2, it can go undiagnosed for so long that you walk into it without the chance to prevent everything. I guess there isnât really a good age to get this thing, but at least in classic T1 you just canât miss it for that long⌠But yeah those musta been some serious spikes if your fasting was normal.