Hi good people!
I'm just wondering if any of you have experienced the sensation of cold or hot temperature as part of your reversing out/nerve healing over time?
It seems like I hear a lot about burning sensations and pins and needles, just wondering if anyone has experience with somewhat more mellow temperature sensations.
Thanks for your time and have a chocolate for me 😆
Yes I get hot flushes or surges of feeling over heated.( different from menopause flushes)
Also can get cold feet with a wave of chill. This is much shorter.
Do have thyroid function checked
Thanks Nackapan. Just to clarify, you feel these sensations you've had are related to nerve healing, or are you saying you have thyroid issues you think they are related to?
hello, would love a chocolate but none in the house.
For several months now repeated waves of tingling up an down legs (mainly lower), This feels cold but I'm not. Overall I feel the cold and heat adversely since B12D.
Recently, I ve had days when I continuously feels like a furnace, an unusual experience. I suppose it's attributable to B12.
The 'crawling ' legs mat be low ferritin .It wax for me along with shakiness
Wheat thanks so much for sharing, it's really helpful to hear about other peoples' experiences. When you say "Overall I feel the cold and heat adversely since B12D" what specifically do you mean?
I relate some to the wave sensation. Mine started as intense burning in my foot but that has mellowed out a lot and is now more temperature waves, sometimes constant, but they come and go. Often it feels like I'm hot/cold/wet all at the same time, it can be sort of confusing. It feels like a subtle burn, in between all those sensations, if that makes any sense. Sometimes more intense, sometimes less intense.
Overall, in the last few months it seems like mine are moving up my body, and I notice less in my feet now. It's interesting because in my growing B12 deficiency I never got to the point of having burning in my feet like some people report- I had a few weeks of the burning in my foot AFTER starting consistent B12 injections. Makes me think there are multiple kinds of nerve damage that can happen. Like whatever damage I had was subtle and slow enough that it wasn't really notable until it started healing.
hello, I m sorry for the late reply. All I can say is that I feel cold at a much higher temperature. Similarly same thing happens with warmer temperatures, can't cope with it.
No sorries at all! Ahh, ok that makes sense. I am more temperature sensitive too, I tolerate less on both sides of the spectrum as well. Ugh.
Do you mean on the skin?
I had feelings of cold water dripping down my leg at one point. A very odd sensation!
Yes, on the skin but also deeper in my limbs sometimes. At times I've felt like almost my entire leg was wet - it was really strange.
Yes that sounds familiar!
I found these sites that describe the same sensation in people with MS - they also have a demyelinating disease so the symptoms can be the same as B12D . It is a type of paresthesia / neuropathy .
mymsteam.com/resources/feel...
multiplesclerosis.net/livin... -- see also the comments, lots of other experiences
Thank you jade_s, this is really helpful!! I really appreciate you sharing your experience. I didn't get to the point of having consistent burning in my feet or pins and needles, but I did get to the point of feeling like I had bugs crawling on me, and I'm fairly suspicious that I was developing both paresthesia and hypoesthesia over the years, based on some of the strange sensations I've had since being on consistent injections for several months.
I don't know if this was your experience, but towards the time I was diagnosed with PA I noticed a pretty reduced sensitivity to pain to the point that it scared me. I could pinch my skin on my arm really hard between my nails and barely feel it. Hopefully some of these strange sensations are nerve healing.
You're very welcome! 
Right before I started SI, I suddenly developed numb and paralyzed arms on the lower nerve, from elbow to the tips of my pinky and ring fingers. Could have stabbed me with a knife there and I would never have felt it. My arms started healing fairly quicky but the whole process took a long time. I went through the whole range of (healing) symptoms - burning, electric shocks, some sort of weird nerve pain, stabbing sensations, pins n needles, tingling, bugs crawling, bugs biting, champagne fizzing in blood vessels sensation, itching, "socks and gloves" feeling like I had tight gloves on, slight sensitivity on touch, and finally back to normal. I can't remember if I had the cold water feeling on my arms - I might have but not consistently and not for long. It was much more obvious on my leg.
I also had numb patches on my back but those had been around for much longer and only now, after 7 years, have they started to get any feeling back - they now itch all the time 😒🤪
After starting SI, I got tingling places I'd never had them before, like face, ears, tongue!
Looking back at my notes, on various days I noted: warm burning hands, hot hands, slight cold, fine tremor, trembling, arm pain, ants on hands. So I guess I did have the same! It was so long ago LOL.
I stopped taking detailed notes 1 year into SI, and at that point I still had some feelings of ants, tingling, pins n needles, but much milder than before.
And that's just my arms. I also had balance issues, visual issues, cognitive issues.
Wow, I am so heartened by your experiences and your progress!! This is really exciting!! Thank you again for sharing all this detail! I don't think my damage got as advanced, but a lot of what you describe I have experienced too.
The buzzing in my face and all over different parts of my body, the hot, the cold, feeling like something was constricting me too tight - never put that into words until you described it just now! I am so encouraged and I'm so happy to hear how you have been progressing, even 7 years in, WOW!!! Thank you and WAY TO GO!!! haha
Thank you 😊 and wishing you the same success!!!
It's great to put a name to something isn't it. The day i read about 'champagne fizz in blood vessels' and 'socks & gloves' was a great day for me 😂🍾🥂
Cherylclaire just put a fascinating post about early b12d symptoms with respect to NICE guidelines, might be an interesting read for you
healthunlocked.com/pasoc/po...
Thank you jade_s!! Do you ever get a feel that's kind of like falling on ice? I ask now because I recently had that feeling again. It comes and goes.
I guess I grew up in a pretty cold climate and fell down on ice a lot as a kid so that's something I'm familiar with. Sometimes I will fleetingly get the sensation of having fallen down hard on ice on different parts of my skin- it burns and stings and feels cold all at the same time.
Maybe that's what you were describing as like being bitten by bugs?
You're welcome! No the bugs biting is different from the burning. That actually feels like a horsefly bite or something quick that bites you and then disappears, or like you've poked yourself with a skewer. Also different from the bugs crawling sensation. 
Yes I've also had that sensation you describe - like you've just come in from the cold so hands burn and sting and still cold! I also grew up in a cold climate so I know exactly what you mean. I've also had the burning without the cold - that was prior to injections. After starting, it morphed into what you describe. My notes frequently have "burning" without specifying the type, but I do remember at the time if felt like coming in from the cold! It improved fairly quickly on SI. Quickly in B12-time, as in a few months
My children called my asbestos hands for years, they were amazed that I could carry or pick up things that they and their Dad found way too hot. Eventually had nerve conduction tests both arms, then surgery for carpal tunnel both hands. Since wondered about this , it was before I discovered the B12 problem
my children called me this for exactly the same reason, I couldn’t understand it as my husband had a manual job with thick skin on his hands. When I realised my feet were the same I thought it wasn’t normal and knew it was neuropathy but it happened so gradually that it was a while before I visited my GP with many other serious neurological symptoms.
I still have partially numb, burning, painful feet but b12 injections have completely healed my asbestos hands.
For many years I’d been unable to regulate my body heat. If it was colder I’d be freezing cold, a little heat and I’d feel so hot. This has somewhat improved with b12 injections but I am still not good with hot weather.
Showgem, thanks so much for your reply! Wow, I wonder if loss of sensation is actually one of the 'earlier' serious B12 deficiency symptoms.
Often it has seemed to me like doctors don't take notice or concern until we describe burning neuropathy, or believe we have hypoesthesia unless we can't feel ANYTHING at all.
Oh my gosh! My husband and kids can’t believe how hot I have the water when I do the dishes. I think nothing of it and have been like that for a really long time. Now it makes me wonder…
JHEW0836 thanks for commenting! I feel like maybe a lot of us have a sort of low to medium level hypoesthesia. Maybe it is really common but not well recognized...Burning neuropathy gets more attention, which makes sense because if you have less sensation, would you even notice it vs. something that feels like being on fire?
Polo22, thanks for sharing. That is really interesting, I wonder if it was B12 related too!
In a way I feel encouraged by what you shared because it makes me think that more of us (than we maybe realize) are sort of silently struggling with hypoesthesia issues. It seems like the burning neuropathy is well recognized and essentially impossible for doctors to ignore, but this is PERNICIOUS anemia right?
Why wouldn't it be quietly and insidiously hurting other nerve functioning like ability to sense heat/cold or pain before ever getting the to point of unendurable burning neuropathy?
Hey Cobalt1312,
I do experience a sensation of my body temperature dropping or rising that is not attributable to the actual ambient temperature which is influenced somewhat by the actual ambient temperature.
I have checked and my actual body temperature is a bit high or low but within "normal range" of fluctuation.
I find it helpful to lower my body temperature with a hot shower, swimming, or driving with the AC blasting. I find it helpful to raise my body temperature by exercise, hot showers, driving with the heat blasting and use of a electric blanket. I believe these measures also aid in my healing and are not simply mitigating my symptoms.
For me this was more acute prior to B12 self treatment and improved with treatment and may be on the wane with current treatment.
Body temperature regulation issues are sometimes listed as a symptom by those that practice the diagnosis and treatment B12 deficiency "professionally".
I would not be surprised if what is going on with me is that my neurological system which includes the hippocampus, which regulates my body temperature has been affected by my life long B12 deficiency.
WIZARD7687 thanks for your detailed reply. Do you mean you have whole body temperature changes, or just the sensation? Or both at different times?
Also, is it your whole body that feels different or just parts of it?
It is not a single body part.
It feels as if I am in a cooler or warmer air temperature when I am not.
Ok, thank you that's really helpful to know - I think your idea about intentionally lowering and raising you body temperature being helpful to you healing is very intuitive and most likely correct. I agree with you that showing the body the correct thing to do seems to be helpful in guiding it in repairs - I've experienced something similar with some of my sensory issues.
I actually think some of the PT and physical exercises I've been doing since starting treatment have helped my body know where to send more reserves too. Like moving my ribs a certain way has helped guide my body to attend to the MS hug I have.
my skin turns so hot you could fry eggs on it. But I also have allodynia due to being b12 deficient for so long.
Parlay thanks for your response! Do you mean your skin literally gets really hot, or it feels hot to you but is a normal temp? So sorry to hear you developed allodynia. I didn't know that was realted to B12 issues, but why wouldn't it be? That's really intriguing to me because I can be really touch sensitive where I get really overwhelmed and irritated by touch.
For example, I don't like holding hands because it sort of makes me feel like I'm gonna crawl out of my body. Sometimes a person may touch me lightly and I get angry and feel the urge to slap them because that light pressure is so irritating.
my skin is like a radiator. My husband loves it in the winter but it drives him crazy in the summer. With allodynia you feel an unreasonable response to normal stimuli, like hand holding, touching, labels in clothes, bra straps, seams in clothes. It can range from annoying to very painful. There’s two types I believe.
Got it! Actual heat, very interesting.
Hmmm... kind of makes me wonder if I'm on that spectrum - I've gotten incredibly angry before when someone tried to hold my hand (not because I felt it was inappropriate) and I felt adrenaline in my chest and extreme rage.
It's calmed down some since being on B12 - before I couldn't tolerate having my cat on my lap more than like 10 min - now it doesn't phase me at all - my hands are still more susceptible to feeling overstimulation though. Clothes don't bother me too bad, but I do tend to wear looser fitting stuff.
I do!! *noms chocolate*
I started noticing it a few years ago, I felt like I was freezing cold, and would dress appropriately and end up nearly passing out. It wasn't actually cold...
Went on for months before I realised it was "my imagination" and probably something to do with my neuropathy.
The worst of the 'chill' that I feel is in my arms, so I wear leg warmers on my arms to avoid the whole fainting due to overheating myself.
Yay chocolate! hehe
Ahh, very interesting. I mean, it stinks, and I'm sorry you struggle with this. Very creative adaptation using leg warmers on your arms!! This has given me some ideas
Has this gotten any better for you over your treatment?
Also, remember that, sometimes, these feelings of heat and cold or tingling are caused by spinal problems, such as stenosis, which causes pressure on the nerves, resulting in weakness, loss of coordination, burning sensations, numbness, twitching and pain. It can be difficult to know when any treatment is, or isn't, working if there are multiple reasons for the symptoms.
Budsa, thanks for your reply. Do you have stenosis or spinal problems?
I'm just wondering if having PA or B12 deficiency is somehow connected to that condition, like if there is some feature of B12 issues that lends itself to people developing stenosis.
I've read and had people tell me that inflammation in the spinal cord is quite common with pernicious anemia, because of the demyelination. I get what you're saying about the need to be aware that there can be multiple causes for many symptoms.
Hi Cobalt1312. Yes, I have recently been diagnosed with stenosis in both the cervical and lumbar spine. I also have bone spurs on my spine which are pressing on nerves that are exiting the spinal column.
I think this is more closely related to arthritis type symtoms rather tgan myelin sheath problems.
Ahh, ok. I'm sorry to hear you have this. Pinched or pressured nerves are not happy to deal with. Thanks for highlighting this possibility, it's good to know what different issues may cause altered nerve sensations.
I am very cold most of the time. A number years ago it was attributed to my low iron levels due to my constant GI bleeds. Now, my iron levels are fine and I haven't had a bleed in almost two years, but still freezing most of the time. I live in FL USA and it is HOT here, 94F currently. I am fine outside, but when I get inside any exposed skin feels like there is cold air blowing against me. We keep our AC at 75F during the day and I am almost always covered in long fleece pants, socks, furry slippers, shirt, sweatshirt and sometime my robe over all of that in order to try and keep warm. I will sometime make several trips/day to our hot tub set at 101F to try and warm up, or use a blow-dryer on my hands and feet to warm them up. It has gotten a bit better over the last couple of years since I used to have to do all of that plus wrap myself in an electric blanket on top everything else. This only happens when I am indoors. I can wear shorts and sandals when outside during spring and summer, but the minute I get indoors with AC I have to cover up. No one seems to have any idea. I have had my pituitary and hypothalamus gland checked and the best I get from all of my physicians is that "Well, some people are just cold natured". That makes me want to jump out of my chair and choke them, figuratively of course. I SI hydro 2x day. BTW - I recently did a trial of changing to cyano and reducing injections to once/day and my cold symptoms got worse as well as many of my neuro and physical symptoms that had improved came back with a vengence, as well as a raging case of gastritis . I have switched back and am starting to feel a bit better better.
scnuke thanks so much for your detailed reply! That cold sensitivity (if I can call it that) sounds hard to tolerate. I'm a bit like you, where if I have skin exposed, it sometimes almost feels like cold air is blowing on me. I can feel that way even in like 77 degree weather. For me, it's not always as intense of a cold feeling, and it happens mostly only on my right side leg. It did happen briefly on my left leg the other day after I'd had light champagne bubble type nerve tingling in my left calf muscle.
I'm chuckling at your urge to figuratively choke the doctors, I get that way too!
Me:"Why is this happening?"
Doctor: "Well, some things happen for no reason."
Me: (IN HEAD TO SELF) "Just say you f#$%ing don't know the cause, don't pretend it's an imaginary occurrence that you think I'm fabricating for attention."
Sorry to hear about what happened when you reduced your SI, really glad you're getting more B12 and starting to improve again!!
Love that: Me: (IN HEAD TO SELF) "Just say you f#$%ing don't know the cause, don't pretend it's an imaginary occurrence that you think I'm fabricating for attention."
Unfortunately for me, on occasion I have not had the restraint to keep it in my head and have unceremoniously been invited to seek care at another practice.
I get that. It's really hard to live with these symptoms and to have to constantly jockey with doctors for validation and understanding. Also, idk if you're like me, but my temper can get really elevate really quickly - I think it's directly related to a lot of my neurological issues. I never used to be that way, but it's like my nervous system is stuck oh 'high' and it doesn't turn down easily. Sending hugs
I am like a furnace dozens of times day or night can't sleep with them. Not menopausal. I am seeing the gp for this, he had taken me off antidepressants and HRT. Blood tests next, then he turns around and tells me he can give me a type of antidepressant that can control these heat flashes that they give to women instead of HRT. Don't you just love them!!He mentioned something about my thyroid might not be functioning correctly as I've put on a massive amount of weight in lockdown (3 stone+) after losing lots but cannot shift it. But I've had this tested before and it's borderline. I'm the type of person that if its borderline then I've got it but try and convince him of that.
He keeps telling me I need to exercise more and I keep reminding him that I have PA and get exhausted after any form of exercise.
pramela thanks so much for your response! Man, that sounds frustrating. Oh yes, don't you love doctors who contradict themselves and offer 'solutions' that aren't doable, grrr....Maybe rather just throwing drugs at us, they should do their due diligence with testing and then look for patterns, not just black and white interpretations about the numbers that come back.
I hear you about being borderline. Looking back, I had borderline anemia/leukopenia for at least 5 years before being diagnosed with PA, and rather than wondering if there was a troubling trend developing, each separate doctor I saw who tested my blood just said "Oh you're basically in range, dont' worry about it."
🤬
I hope you get some answers and relief from these troubling symptoms. Sending hugs!!
The best one I got from a gp was about my heavy periods and debilitating period pain (i had what Naga has from the age of about 14, hysterectomy at the age of 54 proved it plus endometriosis), "oh we've got pills now that can stop the heavy the bleeding", me "and how long have you know about these?", gp"oh about 2/3 years". How the hell I didn't drag him round the room by his nostrils I'll never know!!Don't you just love the little darlings?
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low body temperature
Infantile unexplained temperature 
Are my symptoms consistent with B12 deficiency especially burning sensation. 
Lower leg burning sensation 
