I have constant tingling in my feet and legs for almost a year now. Doctors are ignoring my symptoms. I get the tingling sensations in my back and hands and forearms occasionally too. But the weird sensations in both my feet are very constant, never goes away. Sometimes it feels like buzzing or vibration or even tremors. What could be causing it?
I'm going to see a new doctor this April and I wanna prepare myself. Help?
Hi carelmay14 have your serum B12 and Folate been tested?
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Can you "see yourself" in any of the above people?
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I wish you well
.
No, we hadn't had the chance to check my b12 and folate.
I had appendectomy when I was 11. The doctors said my appendix burst and they had to clean my guts during operation. I'm turning 27 this year.
The tingling sensations started after taking domperidone and esomeprazole for two weeks last year due to stomach issues. I stopped taking it thinking it was a side effect. But the tingles didn't go away. It just spread from both my toes to my calves and shins. Now, I can feel it in my hands, arms and back sometimes too.
But my tingling sensations are constant. They're always there no matter what I do or what time it is.
Can b12 deficiency cause constant tingling??
And could appendectomy cause b12 deficiency?
Yes. As clivealive says, get your B12 and folate tested and come back here with your results.
It might be useful to get a Full Blood Count and your iron levels checked while they are about it too.
I had the tingling before I started injections. It took about a month of injections, 3x per week for my hands and feet to stop completely and I would have it intermittently along my forehead and sides of my face. I would also get what I could only describe as an earth quake under my feet that I could almost always feel if I was sitting and placed my feet flat on the ground. It was the strangest thing but that disappeared as soon as I started injections. B12 deficiency causes some strange symptoms. That is for sure!
Hi Plucky11966,
I also have the earthquake legs and my body feels like it’s constantly vibrating. I’m 8 weeks into treatment (about 3 times a week injections) but still struggling with this though it’s somewhat diminished from where I started. Just wondering how long you did 3 times a week treatments for. Did you also get a completely out of it spaced out feeling especially when in a store or public place and there are very bright lights and lots of noise, that combined with the earthquake legs makes it unbearable for me to go shopping or doing much of anything in a public setting...I’m hopeful things start to improve even more so soon...
Hi ChitN!
I struggled for a good month after doctors started me on injections. No one could decide what my issue was and I had to basically tell them it's b12 after a hospital stay and every diagnostic test out there. After about a month of arguing with them and random injections, I finally found a great doctor that was willing to properly treat me. He had me start every other day injections (M, W and F) and I immediately noticed a difference and it's been almost 4 months. I tried dropping to two injections per week and after two weeks a couple of my symptoms started to return so I will continue this schedule. It's the only way I feel normal. I also take folate with a small dose of iron bisglycinate and that helped as well! My folate and iron were ok but the longer treatment went they started to drop. I truly believe I've been low for most of my life. I don't remember ever having my b12 tested before this and I'm 41.
Yes! Definitely had the internal vibration. I had it so bad one night that I had no control over my neck and my husband called an ambulance. That progressively got better and once in a while I feel a faint vibration but I really need to pay attention to it to really feel it. The spaced out feeling, irritation with noise, major impatience, anxiety, chest pain, tinnitus etc. I noticed huge improvements once I got on a more consistent schedule. My anxiety level was really bad and I've had it most of my life so I ended up starting a low dose of Cipralex. Anxiety is completely gone.
Be sure to check your folate and iron and I also found 1 Ensure daily is great as I prefer it to a multivitamin in that it has more of the supporting vitamins and minerals.
Best I've felt in years! Hope this helps, sorry for the ramble
Thank you so much for your reply Plucky11966!
You give me hope as your story and symptoms are so similar to mine. Very much appreciate your details as I was thinking I was the only one...I too think I’ve been deficient most of my life (I’m 37 now). I’m taking about 4mg of folic a day in divided doses and 10mL of liquid iron twice day. I will try the ensure. Any advice on if you think I’m taking enough folic/iron would be very helpful as my doctor is no help. I had low ferretin (24) when I started about 2 months ago. I plan to get my folate and ferretin rechecked soon.
Tx again, really!
Until I joined this support group I swore I WAS the only one that felt the way I did! I've also come to realize that I'm lucky to be in Canada dealing with this issue as I can buy my vials over the counter and it sounds more difficult in the uk. I feel for anyone though getting the run around and then having to beg for treatment
I am taking Iron Plus which contains 400mcg folic acid and 28 mg iron (ferrous bisglycinate). The bisglycinate causes no stomach issues. At least for me it doesn't....and it's easily absorbed. In the beginning of treatment I found my potassium and phosphorus would drop. Happened 3 times and since then it has been fine.
I would start by having your folate and iron checked. It is important you get all 3 in range. Great advice I got from Clivealive! i did find in the beginning I had more "repairing" to do so maybe that's why more folate was being used. Just check on them from time to time. I was also low in vitamin D and my energy level greatly improved since starting those supplements as well. The only symptom that seems to not want to go away is the sporadic muscle twitches. So annoying but minor in the grand scheme of things.
I personally believe everyone should be treated aggressively if found to be deficient. I had my son (18 yrs) tested and he was as deficient as I was. I'm glad I caught his earlier as so many autoimmune diseases run in my family. My husband also has dropped significantly in the last year so I put him on the same schedule as I am. He had a head injury and since has a lot of symptoms. He has been receiving injections for about a month and there is a definite difference. I just had my mom tested yesterday who has had ms since she was my age😳 Makes me wonder! I can't wait for her to get her results back. It definitely runs in the family as my grandfather and uncles were low as well. My grandmother had Alzheimer's so I feel it's so important to me to do as much as I can. It's not going to hurt them, it can only help. That's just how I see it.
Oh and have them check, along with your ferritin, iron and iron saturation. My ferritin was fun but iron and iron saturation was on the low side.
I hear you on that score. The internal vibrations I get are most disconcerting.
If I look down the buzzing vibration is there if I look up or sit down or change my clothes no matter how many times a day it happens it always startles me..its hard to get use to..
I'm not sure whether when you say the doctors "had to clean my guts during the operation" counts as "gastric surgery" but the fact that you have "stomach issues" and have taken antacids and PPIs makes me wonder whether you have an absorption problem processing Vitamin B12 from your food possibly caused by low acidity.
In addition to the serum B12 and Folate tests (and depending on their results) I suggest you also ask your doctor to test you for "Intrinsic Factor Antibodies" (IFA).
Tingling/pins and needles can be a symptom of B12 deficiency but there may also be other causes.
Remember, I'm not a medically trained person and can only speak from experience.
I agree with Denise and Clive, carelmay. It highly likely that past surgery as a child and the neurological symptoms you are now suffering means you should have been monitored for B12 deficiency all along. All the guidelines advise treatment, "every other day until no further improvement", (British National Formulary) for these neurological symptoms, as failure to treat adequately without delay risks permanent damage.
It may take some time to see your new doctor and maybe a neurologist. In the meantime, I personally would write to GP with the latest BMJ research document summary (GP should be able to access full document (behind a paywall):
Page 1 - Who gets B12 Deficiency:
"Intrinsic factor is a protein, produced by the parietal cells of the cardiac and fundic mucosa of the stomach. It binds vitamin B12 to allow its absorption through the gastrointestinal tract, by way of a receptor on the intrinsic factor that is specific to cells at the terminal ileum. If there is resection or disease of the gastric mucosa or terminal ileum this leads to vitamin B12 deficiency as a result of malabsorption. "
Page 3 "Neurological features
"Neurological impairment includes motor disturbances, sensory loss, abnormal balance and reflexes, cognitive impairment, and memory loss. Extreme cases may present with stupor or psychosis. An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible.
Subacute combined degeneration of the spinal cord involves demyelination of the posterior and lateral tracts. Initial bilateral peripheral neuropathy can progress to axonal degeneration and neuronal death if left untreated. This is followed by disturbances of proprioception, vibratory sense, and areflexia. Patients may mention clumsiness, poor coordination, and difficulty walking. Without treatment, weakness and stiffness may develop, manifesting as spastic ataxia. Damage to peripheral nerves results in sleepiness, altered taste and smell, and optic atrophy. "
..........
Very best wishes for better treatment. It is often a good idea to take someone close with you to your appointment to ensure this is taken seriously.
clivealive deniseinmilden Plucky1976 Polaris
Thank you for your response. I am very grateful for the information.
But I'm quite in a dilemma right now. You see, one of the doctors I saw suspected b12 deficiency and gave me b12 supplements in tablet form 1000 mcg Cyanocobalamin without even testing me, which I took for months. I read that I should be supplement free for months before taking the test?
The first neurologist (2nd doctor) I saw didn't even believe in b12d. She said it does not cause such symptoms and I don't look malnourished so it's highly unlikely. I also asked about MS and she assured me it isn't. She ordered an EMC and NCV test for me for "for peace of mind" which I didn't comply. I didn't trust her so I never went back.
The 3rd doctor looked at some of my test result and said there wasn't anything wrong with me, and gave me gabapentin 100mg. Which I took one time and decided not to continue.
This was the result of my Complete blood count from June 2017. They all saw it and nothing was said.
....................................My Result .............Reference Range
Red Blood Cell ............. 4.4 .......................... 3.8 - 5.8
Hemoglobin ................121.......................... 115 - 165
Hematocrit ...................0.38 ........................ 0.37 - 0.47
MCV............................. 86.30 ......................76.00 - 96.00
MCH ............................. 27.60 .......................27.00 - 32.00
MCHC............................ 32 ............................. 30.0 - 35.0
RDW ............................. 13.90 ......................11.50 - 14.50
Differential Count
White blood cell............ 7.5 ........................... 4.0 - 11.0
Neutrophils.................. 0.65 .......................... 0.45 - 0.75
Lymphocyte................ 0.25 ...........................0.20 - 0.45
Monocyte ................... 0.08 ............................ 0.00 - 0.10
Eosinophil.................... 0.01 ............................ 0.00 - 0.06
Basophil ....................... 0.01 ........................... 0.00 - 0.01
Platelet count .............. 275 .............................150 - 400
MPV ............................ 10.30 ........................... 8.00 - 12.00
I also had hba1c, potassium, calcium, magnesium, thyroid checked along with others which came back normal. Unfortunately, no b12 or folate.
Oh dear, I can well see your dilemma carelmay - if you have an absorption problem, the cyanocobalomin tablets are useless and, as you say, will also skew test results.
Your GPs and specialists don't appear to know much about PA/B12 def. and are not listening to you and you do still have neurological symptoms that will likely progress and become permanent if it is B12D. Rather strange then that you were first given B12 tablets without being tested, then told it wasn't B12 without testing as you don't look malnourished, and third doctor said there's nothing wrong with you but still prescribed Gabapentin! Sorry to suspect this but I'm beginning to wonder whether they don't want you to find out it's B12 deficiency because you should have been monitored after surgery 🤔 . I was once told by a GP that her surgery would not give B12 injections because they were afraid of being sued! This seems to be the main concern these days..........
You'll see from the BMJ summary above that, in any case, there is no completely reliable test - MMA and IF could still be tested but would mean a delay in treatment unless you're able to get done quickly ? B12 def, is very subtle and creeps up slowly over years and all the recommendations, particularly UKNEQAS, state that, even if tests are normal, treatment for neuro symptoms should begin straight away to be on the safe side.
Many on this forum self inject because of the difficulties in getting urgent and adequate treatment - in your shoes, I personally think this is what I'd consider.......
PS. To quote Sally Pacholok on B12def. in the film (now available free on u tube) :
"It's simple - if a person has symptoms and you haven't ruled it out, you haven't ruled it out".
It is unlikely that a B12 deficiency would be related to the appendix operation. Any anaesthetic would have brought on symptoms much earlier and it is a bit of a way from the ileum so damage to the ileum is unlikely.
Testing of B12 levels would be useful to rule that out. Your GP may be under the mistaken impression that a particular form of anaemia - in which red blood cells are larger and rounder than normal - is always present and causes all of the symptoms of B12 deficiency. However, at least 25% of patients who are B12 deficient do not present with this type of anaemia. This is detailed in the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which your GP, assuming you are UK based, can access through the BNF but can also be accessed here (though link may not work if you are outside the UK)
onlinelibrary.wiley.com/doi...
However, this seems of some, possibly only marginal, interest:
Masui. 1994 Jul;43(7):1073-5.
[Meralgia paresthetica after spinal anesthesia].
[Article in Japanese]
Fukuda H1, Ikeno S, Ishii R, Motegi R, Shimizu R, Nemoto K.
Author information
1 Department of Anesthesiology, Omiya Red Cross Hospital.
Abstract
A 27-year-old man underwent appendectomy under spinal anesthesia with 0.3% dibucaine 2.7 ml. The perioperative course was uneventful. The surgical procedure, however, lasted for 1.5 hours in the supine position. On the second postoperative day, a postspinal headache occurred and lasted for 18 days. On the seventh postoperative day the patient complained of numbness along the anterolateral aspect of the left thigh innervated by the lateral cutaneous nerve. There was no reflex or motor deficit indicative of the involvement of other nerves. The disorder was diagnosed as meralgia paresthetica caused by the surgical procedures. The numbness disappeared after the oral administration of mecobalamin in several days. In the treatment of a case like this, it is important to exclude neurological complications caused by spinal anesthesia.
PMID: 7933481
Re. "It is unlikely that a B12 deficiency would be related to the appendix operation. Any anaesthetic would have brought on symptoms much earlier and it is a bit of a way from the ileum so damage to the ileum is unlikely."
? ? umm, the appendix is right next to the ileum Gambit...
Pins & Needles & tingling
Hi new to the forum. Strange shivering/tingling sensation.
Horrible numbness/tingling.
Tingling in tongue?
