Hi all, I have had T1 for 33 years and have done really well until just recently. Mild kidney issues but not to the point of having to see a specialist yet, but my main issue is a very rapid onset of neuropathy. For years I had a small patch along the side of my foot that would tingle a little once in a while. Suddenly a few months ago I felt an icy sensation in my hands at times, so they did some nerve conduction studies and the neurologist said it was probably a combination of carpel tunnel and diabetic neuropathy, and recommended carpel tunnel surgery which I have scheduled in a few weeks.
But just in the last 6 weeks, numbness/tingling sensations have come on and super intensified and spread to both feet and legs, in my hands and forearms, and up above my knees and even my back at times. Occasional twinges of pain but mostly just the prickly tingling, at all times of day and pretty consistently. Frequent chills and goose bumps, even in warm temperatures. This is terrifying because of how it came on and worsened so much in just a few weeks/months. My endo is concerned too because he says it usually comes on more gradually and usually with higher-A1C patients (I’m almost always in the low 6’s). He sent me to a different neurologist next door, who rushed me in and out with “Well, you’re a long-time diabetic. Of course you have neuropathy!” She didn’t even grasp the difference between Type 1 and 2. Needless to say, I’m waiting to get in with the other neurologist.
Just in mid-May I was in a very active theatre show and was doing just fine. And now just a few weeks later I am having issues with typing and with my feet and hands falling asleep spontaneously. Has anyone experienced this rapid onset and intensifying? Would appreciate any insight from anyone dealing with neuropathy issues.
I’m sorry you’re dealing with this. I just wanted you to know that I had symptoms, much like you described, when my A1c was in the high 7%, low 8% range. When I lowered my A1c down to the low 6% range, they disappeared. That was four years ago. Your report of a low 6% A1c puzzles me, too. How is your BG variability?
I have my moments of variability, usually revolving around PMS or travel (and potlucks), but I check BG 6-8x/day so I can usually catch it, and most of the time I’m pretty darn stable. Thanks for your input.
My A1C was always in the low 6% range and I was diagnosed with neuropathy nevertheless. My SD was about 60 which could have been the problem. I was on MDI without CGM at the time. This was the best I could do with the tools at hand.
Firstly, sorry to hear about your ordeal. Stay strong, I’m sure you will find some answers soon.
I had a similar experience about a year ago, Type 1 for 19 years. For the past decade (so basically since I have been out of my teen years as I’m currently 26). I’ve had an A1c fluctuating between low 6s to mid 7s. My BG variability was not great though, ranging between lows to fairly big highs maybe once or twice a week. Last year out of the blue I started getting tingling in my feet and my left hand, numbness and all sorts of other strange neurological symptoms.
Reported it to my Endo who said given my duration and my control, and the fact it just came on out of the blue, he seriously doubted it was diabetic neuropathy. Also that I have no other complications to date. Had a number of tests with my General practitioner. Nothing really showed anything, I never saw a neurologist as I tightened up my control, got my A1c down into the 5s and predominately my symptoms went away, whether that means it was diabetic neuropathy or not I can’t say. I still get symptoms from time to time, but it’s certainly not what it was and often they are associated with elevated BGL (not always but often).
I’m sorry your’e going through this. I would definitely find a good neurologist and hopefully they can help you. Try reading a lot about the treatment online too. Some people at tu said they have used folic acid and b12 and other supplements to help. I was taking them but I stopped folic acid and alpha lipoic and only take b12 2-3 x per week now because my level is very high at the moment.
I also have neuropathy symptoms and possible vestibular migraines with vertigo and a bunch of other symptoms. I’m a lot less stable lately, I’ve always had lots of fluctuations so I’m scared I will get full blown neuropathy too. I have had tingling for a long time now and some of it may be from other nerve damage from injuries I had, carpal tunnel now and who knows what else besides diabetes too. I injured my elbow and it seems to be causing a lot of tingling and pain on and off- someone thought it was carpal tunnel but who knows. I haven’t done the nerve testing because I don’t want the surgery and the test is painful. When bg goes too high I can definitely feel it is happening and sometimes when it comes down too.
It could also be hypothyroid/hashimotos, that can cause a lot of these symptoms too. I have that too but I’m only taking a very low dose of levo because increasing the dose seemed to be spiking my bg.
Angie - sorry for the symptoms - tingling all the time would drive me crazy! For what it’s worth, my brother lives in California and has fibromyalgia. This past year he decided the meds. he was taking for the pain had too many side effects and tried some kind of marijuana cream or oil which has given him lots of relief in his feet and hands. don’t know if it’s an option for you but I though I’d pass this along
Neuropathy is a general term used to describe a problem with your nerves. What you describe is peripheral neuropathy and while we think of it as all due to diabetes, there are many other causes including:
B12 deficiency
Something toxic
An injury resulting in “nerve compression” (like frozen shoulder)
A neck or back injury (like one that affects your sciatic nerve)
An infection (like Lyme disease)
Celiac
And even too tight shoes
Typically peripheral neuropathy from diabetes doesn’t creep up on you, particularly if you have been well controlled, but it could. You may have not noticed it, or it could have suddenly hit a particularly crucial route of nerves. But in your case being diagnosed with Carpal Tunnel Syndrome (CTS) means that at least several months ago you were having significant enough symptoms to be diagnosed.
In either case a neurologist can do conduction tests and determine which nerves are affects and probably where and help explore what it going on.
ps. According to Dr. B the vast majority of patients he sees already have neuropathy, but it often is not noticeable from symptoms, only from conduction studies.
pps. I had the CTS surgery and it was very easy and quickly relieved the vast majority of my symptoms.
Similar for me too angivan. It started out with extreme cold and then progressed to other things, very rapidly i might add. Endocrine doctor was in disbelief based on my bg control, A1c was approx 6.5 at the time of onset. I had trouble getting better control of my diabetes, even with a pump and cgm machine. My current approach is to try the low carb diet, so far so good, blood sugar and cgm are flat and below 100 virtually all the time. Carb counting didn’t work at all for me
If what you have is neuropathy and you end up needing to get even better bg control then this might be an option for you to consider. Good luck!
