Who here has been diagnosed with diabetic neuropathy/ nerve damage? After how many years of living with diabetes did you develop it?
I have been having an ongoing issue with numbness, tingling, and burning all over my body along with unsteadiness. Had an MRI this past week to rule out MS, my next test is a nerve conduction test to check for diabetic nerve damage.
From what I have read typically diabetics who have had it for many years are the only ones to suffer this type of damage. I have been "officially" a type 1 diabetic for 3.5 years, diagnosed with type 2 4.5 years ago but also had gestational diabetes 9 years ago (so think I've had it ever since=9 years of damage).
What were your neuropathy symptoms? I do not only suffer with my hands and feet but widespread and random numbness and tingling.
I've been Type 1 for almost 23 years, I was diagnosed when I was 9. So-so control for all of those years (A1c of mostly 7-8, BG that goes high and/or low daily).
I don't think I have diabetic neuropathy but I have been having my hands and sometimes feet go numb/tingly a lot after various activities, so I'll probably bring it up with my endocrinologist when I see him next. It only ever happens after specific things/positions, so I'm thinking it's more likely an issue with various nerves being squashed, but who knows. I just don't want it to get worse so would like to know the cause.
I have had this issue since before I was diagnosed. Mine feels like intense bee stings. When my levels became more normalized I have less of those pains but I still have them.
Diabetic neuropathy refers to any diabetes induced nerve damage. The symptoms of numbness, tingling, or pain typically occur with peripheral neuropathy, I don't think it commonly occurs all over body. Peripheral neuropathy is most often associated with toes, feet, legs, hands, and arms. There are other expressions of diabetic neuropathy which are called proximal and focal neuropathy, but they are associated weakness and pain, not the symptoms you describe.
I suffered from Carpal Tunnel Syndrome (CTS) before even being diagnosed. I attribute my CTS at least partly to my diabetes. It grew steadily worse despite therapy, so that a couple of years ago I consulting a neurologist and had surgery. I still have it, but not nearly as bad. My symptoms are numbness, tingling, sensitivity to compressions and occasional inflammation, swelling and pain. A neurologist can do very competent tests to determine whether you have nerve damage. Mine was absolutely clear.
I was diagnosed with peripheral neuropathy due to my years of rheumatoid arthritis. But looking back, it was probably a symptom also of my diabetes. My pain felt like someone was sticking my feet with a a thousand razor sharp, hot sewing needles. My hands felt as if an elephant were constantly sitting on them--they were numb and asleep all the time.
The rheumy placed me on Lyrica which caused several weight gain and increased muscle pain, nerve pain, and edema in my legs, ankles and feet. I could walk for a period and then my hips would lock up and I would freeze for a minute or two before I could move slowly and painfully.
Finally, after many tests including the possibility of MS (thankfully the scan came back negative), I was changed to Tompamax. It has been a lifesaver. No more pain and mood swings (Lyrica was bad for me). Tompamax is originally for migraines, but can be used for RA neuropathy off label. Not sure about diabetic neuropathy--my endo has never questioned it.
My RA as led to plantar fasciitis (sp?) in my feet so I was dealing with both. Physical therapy for the plantar fasciitis only made the neuropathy worse and I ended up on a walking cane. Plus I had switched rheumys and the new one had put me on Actemra which was a disaster.
I returned to my old rheumy who started me back on Remicade and the podiatrist started prednisone shots in my feet plus increased my daily oral dosage which probably pushed me into diabetes faster.
I was misdiagnosed as a t2D for 2 years. When I got out of the hospital, I had intense, painful neuropathy. So intense, at night I rubbed a place on my scalp raw to try to cancel out the pain.
I started exercising, and it went away. I was recently dxed with Ataxia, but the docs don't think it's D related.
I've had T1D for 23 years, and I can't say it's a cure, but the neurologist said he thought there were two parts to neuropathy: nerves and circulation, and that I may have improved my circulation enough to do away with the pain. I have a teeny bit of numbness, but no pain.
I have heard of the supplement of Metanx and have seen some medication for nerve pain. They didn't have anything like that when I was first dxed.
And I won't lie to you, those NCV tests can hurt a little.
Gonna add my A1Cs at diagnosis and ever since have been 5.3-7.1.
I'm sure I have it due to symptoms, worst in my feet. I also had a dvt so that affected things too. Vitamin B 12 and exercise seems to help. I also had nerve damage from injuries long before that was supposed to go away but never did, so I had some of the symptoms before. I tried a sample of mentanx but I think it is much more expensive than simple B12.
My neuropathy was far worse when my glucose levels were really high. It has improved with my loss of high glucose readings but occasionally I will have a really painful bee sting type pain but mostly in my toes.