This is great to hear! Glad you are doing well. The flare is very similar to before, yes. Hoping for a similar result in that it calms down. Slightly better today, but still not great.Sorry to see you had a flare. Was it just like what you had before?
I’m glad to report that my symptoms have improved quite a bit. The random burning sensation has been gone for months. The intermittent quarter size burning spot on my foot hasn’t appeared in weeks. The paraesthesia in my feet has decreased dramatically and is only barly noticeable.
I’ve never had any pain, but what I donget several times a week is awakening to one hand feeling asleep. It’s very upsetting. i wish this would resolve.
My BG is quite good. Pump estimates my a1c around 6.7. Will get B12 checked soon. Still taking treatment dose.
Really? That’s interesting about your hands going to sleep. It actually wakes me up it’s so uncomfortable. It also starts to happen if I’m reading in bed in certain positions. That’s why I wonder if it’s spine related. Idk. I’ll revisit it again with my neurologist.This is great to hear! Glad you are doing well. The flare is very similar to before, yes. Hoping for a similar result in that it calms down. Slightly better today, but still not great.
I wouldn't worry about your hands falling asleep. That's pretty common for anyone. Has happened to me off and on for years.
How are you doing these days Firefly1? Back to 100%?Have you seen a neurologist? Changed eating? Maybe A1c a little on the rise? The Neurologist saved my life. I had no idea what was happening and she said TIND is common, even though not reported a lot, and may take a long time to clear. It’s been an interesting battle. I can go 3-4 days feeling great, then bam, some burning. The freezing pain has stopped.
I’d check with your doctor of course, but also check vitamin B12 and B 6 levels. My neurologist diagnosed me with B12 deficiency last year and said it could be the cause of my foot paraesthesia. I’m on daily treatment for that. I am better. He also told me to a avoid taking B6, as too much of that can cause neurological problems. I hope you can get some answers.Hi. I'm new tok all this but pretty sure I've got this TIND too. It's great to read you are all doing much better. This started for me 4 months ago with sudden pain aching and numbness in my feet and legs. Not much help from doc or neurologist, can't drive or work as struggling with walking due to these symptoms. Feeling low now, any advice would be much appreciated.
Did this happen to you after rapidly lowering blood sugar levels?Hi. I'm new to all this but pretty sure I've got this TIND too. It's great to read you are all doing much better. This started for me 4 months ago with sudden pain aching and numbness in my feet and legs. Not much help from doc or neurologist, can't drive or work as struggling with walking due to these symptoms. Feeling low now, any advice would be much appreciated.
B12 was in range although my doc prescribed supplements, tablet form but low dose. Got doc appt, again next Wednesday and a CT scan Thursday, trying to rule everything else out I think!I’d check with your doctor of course, but also check vitamin B12 and B 6 levels. My neurologist diagnosed me with B12 deficiency last year and said it could be the cause of my foot paraesthesia. I’m on daily treatment for that. I am better. He also told me to a avoid taking B6, as too much of that can cause neurological problems. I hope you can get some answers.
Also look at B6, particularly if on some meds affecting B12 synthesis and recycling . B6 is a key cofactorThere is very interesting information about what members have experienced here. The
symptoms can be baffling. I would encourage anyone who comes back here to catch up on this thread to please get your Vitamin B12 level checked, before you take any. Taking it can artificially inflate the numbers. B12 deficiency can cause many symptoms and is often overlooked, especially with people who have diabetes. I’m dealing with it now after finally getting diagnosed last year, but not properly treated. Some people don’t absorb it well, so just taking it orally, doesn’t guarantee absorption. I might have TIND too.
Right. My B6 was barely in normal range, but neurologist said to absolutely not take any.Also look at B6, particularly if on some meds affecting B12 synthesis and recycling . B6 is a key cofactor
Too much B6 can cause neuropathy symptoms .
Has it gotten any better since the beginning? I know mine was awful the first couple of months, and then slowly got better over the years. In the middle of a flare up now, and have no idea why.Yes. Been diabetic for years and at the beginning of last year my blood sugar was 80 mmol and after 3 month went down to 53mmol since then had nothing but problems. Doc and nurse were pleased with reduction and so was I until I started having these symptoms. Seen neurologist, had loads of tests, including B12, lumbar puncture and mri. No diagnosis as yet, just saying it's due to diabetes!
How are you feeling now? Still having problems with the flare up? Can I ask what your symptoms were when you first got TIND and how long they lasted. Did you take any medications?Has it gotten any better since the beginning? I know mine was awful the first couple of months, and then slowly got better over the years. In the middle of a flare up now, and have no idea why.
I understand. Yes, incredibly frustrating.Hi. No, it's been bad since September and no improvement yet. It's pretty disabling. Started pregabalin but only recently so still on a low dose as yet. Aching legs, numb sensations in legs and feet but pain in feet the worst! Just can't believe you do something good and end up with something so bad!!
Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.How are you feeling now? Still having problems with the flare up? Can I ask what your symptoms were when you first got TIND and how long they lasted. Did you take any medications?
Do you suppose it’s coming from something else?Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.
All sounds very familiar!!Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.
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