Hi all, I'm new to this site. I was diagnosed with B12, folate, and vitamin D deficiency due to absorbency issues caused by weight loss surgery. So I don't officially have pernicious anemia but I hope I'm still welcome. My symptoms have been classic B12 deficiency symptoms. Weakness, panic, memory problems, Etc. But the weird part is this, I figured out that I have a lot of swelling in my neck. When I press on it at the base of my skull it feels like someone put a cattle prod to my brain. And it sets off severe panic as well as weakness and tingling of my entire right side. I have been icing my neck regularly and it helps a lot. Has anyone else had something like this? I have an appointment with a neurologist but I would really love to know if anyone else had this. I'm assuming it has to do with damaged myelin sheath and or spinal cord, but I have not yet had an MRI. I've been supplementing for 4 months and most of my original symptoms are either gone or much better, but my neck is still a problem and my spinal cord feels burny sometimes. The burning just started in the last week or so and I'm scared that there's something else wrong. But maybe it's just part of the healing? Anyone with similar symptoms please talk to me. I feel so alone.
nerve inflammation in neck causing pa... - Pernicious Anaemi...
Pernicious Anaemia Society
I should add that the same thing happened to me last year and went on for a long time and I even had several episodes of psychosis. But I got put on B12 for anemia and I got better and I never put two and two together. My surgeon never told me that I would be dependent on supplements. I'm still scared that B12 is not the whole answer but I don't know how else I would have gotten better last year if it wasn't. I'm just really looking for other people to talk to who have been through it. Thanks
Hopefully some more knowledgeable people will reply and can shed more light on your symptoms.
Does your neck look very swollen?
I have had B12 and folate deficiency and experience very similar symptoms to you, however I also suffer from hypothyroidism and this might be something you might want to investigate.
It could very well be B12 and folate causing your issues but if symptoms are not improving after treatment I would consider asking your GP to check for Hashimotos, hypothyroidism as flare ups of this disease can also cause the neck pain you describe. If they refuse you can get these checked via a private blood test companies.
Have you been offered regular B12 injections? If your surgery has affected your ileum this will cause B12 absorption issues and you will only be able to get sufficient B12 via injection or some cases sublinguals.
You don't have to answer but you said you had weight loss surgery? If you had/have been struggling with your weight this can often be due to thyroid issues also.
Thank you for replying! I will ask about that. It feels like a bundle of swollen nerves at the base of my skull. Icing helps. All I can think is that b12 caused nerve damage and so it's swelling until it heals. I can't figure out what else it could be. Neither can my gp. Neurologist next week is my only hope, but I'm worried he will not know either.
No problem, hmm ok, if it was at the front of your neck I would have said Hashimotos but now you say it is at the back it does sound more like a nerve issue. Hopefully your neurologist will send you for an MRI as this can rule out a few things. Do you take a B complex? Or know if any of your other B vitamins are deficient? They may help. If it started after starting injections it may well be the healing process and I know a lot of people's pain unfortunately gets worse before better.
If it does get worse though I would contact your GP again or head to A+E as it sounds very unpleasant and I think they should be taking it more seriously.
I really hope you get some relief and an answer to your pain soon!
thank you! yes, I'm taking a multi and I made them check every other vitamin I could think of LOL. I'm supplementing the ones that were low.
I'm not an expert on this by any means but are you actually on injections or are you taking tablets? Just concerned that you are getting the right treatment. From what I understand injections are imperative to prevent SACD.
Hi! I completely forgot about this symptom until I read your post! I had severe pain at the base of my skull before starting injections. I could barely tolerate putting even the slightest amount of pressure with my fingers at the base of my skull. It was accompanied by constant headaches. For me it was one of the first symptoms to disappear thankfully. Just make sure that your folate and iron are ok as well. I also found that I get sore if my vitamin D gets low.
I have had back pain now for over 6 years and am really wondering if it has something to do with my levels being low and never knowing. It goes from severe to somewhat tolerable back to severe and so on. It’s awful! I will never know why exactly. So crazy all that b12 affects. Wishing you well
Wow, it's so good to know I'm not alone. How quickly did this go away for you? it's been 4 months and I'm so frustrated. but I know nerves take a while
Oh wow just reading that reminded me of my severe pain at base of neck too. Used to get so inflamed and it felt like my head was a ton weight and it was about to snap any minute.
It has now pretty much disappesred.
I regularly use magensium oil on my back to help with relaxing nerve and muscle pain and it's helped immensely.
B12 injections also cured me of long life lower back radiating pain.
Rest of it is now poor muscle tone form years of issues.
Try doing neck stretching exercises from side to side (pulling your ear to your neck ) to strengthen the side neck muscles.
Also pull your head back and push on your chin forcing your head back (as if to straighten your neck- a bit like pulling or ducking back if someone took a punch at you!) You should feel more relief from that area too. It coukd just be inflamed and more sensitive now you're awakening your nerve signals with b12 tx.
I also have thyroid issues so I don't know how much was controlled with that too.
I'm glad I'm not the only one. The best thing about this board is feeling like you're not alone. A neurologist just diagnosed occipital neuralgia. I'm hopeful that it will resolve with steroids. I do think it's related to my deficiency but now I need to get the swelling down. Thank you for your reply.
The serious nerve damage caused by a B12 deficiency is SACD (subacute combined degeneration of the spinal cord). It can produce many symptoms, varying from annoying to life-changing. But I’ve never seen any mention of swelling in the neck being associated with it, just slight swelling of the cord itself (only visible on MRI).
I’d wait for the MRI results. It is an excellent technique for SACD as there’s one test (changes to the T2 hyperintense signal - nope I dunno what it means either) that is very specific for SACD.
Hi blue2323 is it your lymph nodes swollen at top of neck at base of skull. The reason I am asking is I have been ill for 13 years and took me 10 years to find out I had a number of infections. The first was strep c which was treated 10 years ago and very recently showed up after a throat swab. The 2nd was pseudomonas aeruginosa after an ear swab 4 years ago and only when I was given ciprofloxacin I had improvement all over body due to nerve inflammation from infections. The reason I am mentioning these is because this all started after I had megaloblastic anaemia 14 years ago and my gp didn't treat as follow up blood test a few months later showed normal. The original test was done by my neurologist and only now am I being told they reckon it's my vitamin levels being depleted by epilepsy drugs which I have been on for 37 years causing me to have so many infections. My vitamin d, b12, folate have so far showed up being deficient. I am having to self treat because levels are low end of normal. I hope you get some answers from neurologist.
Hi Jenny40, thank you for replying. I hadn't thought about infection but my white counts are normal, and I think if I had an infection my white counts would be high. Also it feels like my nerves are inflamed rather than lymph nodes but I can't be a hundred percent sure. But when I see the neurologist I will mention the possibility of infection. I hope you are recovering and doing okay!
I finally saw the neurologist and I have a diagnosis! It is definitely occipital neuralgia. I have to have an MRI to see if there's any thing causing it but I suspect it's related to my B12 deficiency because the symptoms all came on at the same time. And I've seen other people on here say that they have it too. I'm on steroids now and I'm praying it will resolve . Thanks for all your comments and advice.
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