Scheduled for 2x a week for 4 wks, then assess. Also anyone experience a chronic cough relieved by B12 injections? I also have “hidden hearing loss” which I feel is connected and wondering if it can be reversed. Thanks much - wishing everyone good health.
Hi all - new here. Advanced neuro sy... - Pernicious Anaemi...
Hi all - new here. Advanced neuro symptoms. Just started b12 hydrox injections 2 days ago. Is it usual to feel much worse? Thnx!
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SigNi
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Gambit62Administrator
unfortunately it is quite common. B12 is used by a lot of processes that go on in your cells.
A lot of the feeling grotty that we associate with being ill is actually the immune system kicking in so if your immune system has been compromised by B12 deficiency and starts again then you may feel that you are coming down with everything under the sun.
B12 also plays a part in the processes that reset neurotransmitters as well as in maintaining the myelin that insulates neurotransmitters - that means that there are at least two ways that B12 can cause neurological problems - myelin regrows very slowly so won't be affected but if neurotransmitter processes are now working properly then the analogy I would use is that it is like having an analogue radio turned up all the way because the signal is very weak and its the only way you can hear anything and then suddenly the signal starts to come through more strongly and there is a moment when you are overwhelmed by the noise ... not sure how I'm going to explain it when radio goes completely digital 
Unfortunately it takes the brain a little while to respond to the changes in neurotransmission.
The cough may be related to something happening with the autonomic system that stopped working properly because there wasn't enough B12 for the process that resets nerves to run properly, which would explain why it cleared with B12 - swallow reflexes are definitely something that can be affected by low B12
Thank you so much for your generous response - this explains a lot. Very reassuring. I also just read B12 was previously called “maturation factor.” I guess some of the pain could be a mass maturation event in the bone marrow. 😳
The swallow reflex was something I didn’t even notice had deteriorated until my loading doses brought it back. Thought that was just my weird quirk😂
Mine is twitchy eyes. Thought it was overwork or too much computer use - even when I hadn’t been on the computer or overworking. 🙄 Now I recognize it as part of a larger pattern telling me I’ve some nutritional issues.
Oh goodness - I have the restless legs & couldn’t sleep the night after my first injection. Thank you for responding. It’s reassuring to know that some of the neuro damage can be reversed. I will try to take my discomfort as a sign of recovery. Might take a sleeping aid as well though. 😢
I also had severe neurological symptomsVertigo. Migraines. Restless legs
Heart palpitations
Vision problems. Sensitivity yo noises snd light. Ect
I got alot worse before improvements.
They do happen but can take time
Keep sn eye on folic ferritin / iron vit d too.
It csn be a rollercoaster but keep going with your b12 .
I wish you well
.
In my experience, it's a burning pain when the feeling starts to come back. Others have reported something similar.
Where before I felt nothing, now I can feel heat and it'll hurt for a while. The hurt is how I know it's healing.
When my brain problems heal, I don't feel pain, just more clarity of thought. My memories are quicker and my thoughts run faster.
I've read reports of people who were treated for b12 deficiency and they sometimes feel volcanic levels of rage, even after the treatment is done. The anger seems to be a common symptom.
I've learned coping strategies to not blow up on people, though my face will still look a little unfriendly. It seems to be part of the healing process.
Thank you - That’s all really interesting. My pain is sharp & stabbing. I had burning before the injections, though. Most worrying is the aching pain in my lower back and sides. It’s very intense - like a bone pain & makes it hard to stand and walk. Blood cell production? And the rage. Good to hear someone mention it. I’m not sure if it’s because of the B12 or the medical gaslighting, but I have loads of it!
Hi SigNi- it seems like we are on a similar path with similar symptoms. My treatment started in September after decades of misdiagnosis and I have the same deep bone and muscle pain in my back and sides (along with a very long list of other symptoms). It feels like my ribs are constantly being tortured. The pain radiates down my legs sometimes and into my feet. MRI of my spine shows nothing. I’ll be curious to hear more about your recovery. I will post another thread about mine as well soon. Take care, SQ
Also , I have had a chronic intermittent cough for many years. It finally stopped when my injections started.
Thank you for reaching out. I wouldn‘t wish this on another, but it‘s great to have company. If anything it reduces the sense of feeling nuts. 😢My response to injections is slow going and fatiguing. I have so many other deficiencies it‘s hard to tell what is affecting me most. But one must start somewhere. I do believe the pain and stiffness may be lightening just a bit, although my energy remains flat. I was most encouraged when the cough stopped almost immediately. I look forward to hearing how you are doing. 💗
It is great to be among people who understand what you are going through. 😎 My recovery is also 'slow going and fatiguing'. Some days I feel as though I am bouncing back, and others it's as if I have received no treatment at all. My energy is also very low to flat, as I still have breathlessness most days. Working hard to keep the faith - we can do this!! 💪
Just another note - I‘m convinced my pain is inflammation related - although my blood tests don‘t show it. The stiffness and sharp joint pain disappeared during a 10 day trial of prednisolon. It all came back when I stopped. Years earlier during a bout of pneumonia and anemia, my cough stopped while I was on prednisolon, antibiotics, & b12 IV. I thought it was a respiratory issue, now I wonder if it has been a vagus nerve issue all along - related to b12.
Another interesting similarity.... I was on a very short course of prednisone this summer (pre diagnosis) and my back, glute and side pain went away for a few days also. One of my many lab tests earlier this year showed a high CH50, which I was told was due to 'inflammation of unknown origin'. I pressed a few different doctors to dig deeper on this since I was so ill, but they couldn't offer any explanation. Among my many symptoms have been other inflammatory conditions like rosacea, overall skin itching, dyshidrotic eczema (burning feet and hands), lichen sclerosis, ibs, chronic eye inflammation and chronic sinusitis (with extreme inflammation in my nasal passages and throat. ). I assume the PA is the cause of all of these. Ironically, oral prednisone wreaks havoc on my gastritis. 
One last thing- Before I developed shortness of breath from PA, my lung xrays showed significant pleural thickening in both lungs. The doctor could not explain it but repeated the xray 6 months later and it was unchanged, and so dismissed it. I am a non-asthmatic, non-smoker. I wonder if this was caused by PA?
I'm sorry for the delayed response - I went down with terrible fatigue over the last weak. Wanted to say that I have a history of pneumonia, bronchitis, sinusitus, and anemia. I somehow thought it was all related, but thought it was just overwork and stress - but now I too wonder if it's related to my other deficiencies - especially B12, Folate, and Omega3. Yes to the pain and itching, the burning, shortness of breath. I also have pain in my legs going up stairs or hiking, am always warm (except for hands and feet) and sweat way too much. Totally heat intolerant and flush easily - but it doesn't feel like post menopause symptoms. I went through a phase of extreme weakness. I lost almost all strength in my arms - couldn't get out of the tub. I'm a bit better but still really wimpy. I can't remember if the prednisone relieved the itching, but am inclined to think so. Also burning skin on my arms at night along with the numbness in my feet and hands. Also a lot of clumsiness - loss of balance, dropping things and knocking them over. I still walk weird - very stiff in the pelvis and hips. I also have disabling back pain that is not explained by radiology. I spoke to two different neurologists about all of it - both said everything was unremarkable. I translated this to mean "You are in your 50's, what do you expect? And you're probably exaggerating." None of their diagnostics were helpful AT ALL.
I am a veteran and I was sent to a psych for eval due to the depression, anxiety, and cognitive loss. The psych was a woman who looked at my records and said - "This is all related! You're too young for this!" I thought - tell that to the dozen doctors who just wrote me off as old and mental. She mentioned that her husband, also a psych, specialized in bio-chemical processes - not pushy - but suggested I might want to see him. He's the one who figured it out - he ran about a 1000 Euro in blood tests to do it though. But I was happy to get some answers - I have a lot of deficiencies, oxidative stress, and methylation & mitochondrial dysfunction. Still trying to educate myself on what all that means. At least I now have some labs I can take to the GP and the internist to get treatment and try to find the cause.
Sorry for the long note! How are you getting on? I finished 4 weeks of loading doses and am waiting on blood tests and an appointment with gastroenterology. I am continuing to self-inject as the GP seems uncertain what to do without knowing the underlying cause. I seem to be on a day on day off energy cycle. I get a few essentials done - paperwork or housework and then I am down all the next day. I feel so guilty. I had to quit work finally last spring - I just couldn't think clearly anymore, I was in terrible pain, and my energy was nonexistent. It also became dangerous driving with my lack of concentration and light sensitivity. It was torture. Better now being able to rest, but waiting it seems for the real effect of the B12 to kick in. I also started some other supplementation - so that may help. Would love to compare how you are getting on.
I'm so sorry you haven't felt well, SigNi. I hope that your GI tests go well and that you are able to get some relief. I'm so glad you found someone to give you some answers about your deficiencies. The not knowing is enough to make you mad! Many of your symptoms sound familiar to me. This dreaded disease takes on so many forms. Unfortunately I am still struggling quite a bit. In spite of 2 months of injections, I am overwhelmingly fatigued with chills and some shortness of breath. Some of my other symptoms have slightly improved, but I feel so weak and shaky that it's hard to function. I do work, but I can barely make it through the day and certainly don't have any energy after. I am not sure how long I can keep up with it and certainly understand not being able to work. We need to take care of ourselves as a first priority. I am sending you good vibes for healing and more answers. Best, SQ
Yes - the knowing something is not right, & feeling alone as it silently worsens is a nightmare. Having some answers is such a blessing. I got my third COVID shot (booster) & while only had about 24 hours of a reaction, I feel it has set me back PA-wise. Cough, weakness, leg pain, breathlessness all back to almost original state. I am upping the B12 injections. As usual, it fixed the cough, but still struggling with the other. Have you had any issues with the vaccine? How are you doing?
Hi SigNi,I hope your reaction to the booster has calmed down by now. I have not had mine yet because I had a terrible reaction to the first two. In fairness, I had undiagnosed PA and very severe symptoms to begin with and have definitely improved a lot since then. I’m curious to hear about your self injection frequency and how the booster symptoms resolve.
In the meantime, I SI every other day and have started to see more consistent improvements. There are days that I feel fairly normal! My fatigue, many skin concerns, severe muscle pains, overall discomfort, vision, headaches, and some other neurological issues have improved. I will stay the course and I am hopeful for better things ahead. Best , SQ
My booster reaction resolved pretty quickly, so can’t complain. My SI is about once a week now. And my recovery has slowed down. I’ll finally go into the hospital after the new year for a work up. Seems almost certain there is something gastro going on & I need to check on cardio. When I go too long & frequent with the b12 I get chest discomfort - either from high platelets or sodium additives in the injections? Or a reversing out symptom as I also had chest pain from the deficiency? I had the same problem with b12 IV about 12 years ago. Had a big cardio workup a few years ago and all was well, so just checking. So glad to hear of your improvement- it gives me hope. 💗
SigNi, what you describe is experienced by people with low thyroid - hypothyroidism; another wonderful autoimmune condition that often accompanies PA. You should join the Thyroid UK forum and read all about it!
Thank you! Good advice. One doc did an ultrasound on my thyroid & checked blood levels. All normal in his view. I am going to see a family friend who is an internist & double check.
Hi Sammyo23,
Maybe you could start a thread on forum about B12 deficient people feeling volcanic levels of rage. I'm very interested.
It's on the list - but the list is long....LOL
Yes SigNi, my husband's chronic cough disappeared after a few weeks of injections. Hang in there! Btw, he used cyanocobalamin as hydroxo is not available in Israel.
Thank you for confirming & the encouragement. I had an ENT tell me flatly - “No connection.” My experience tells me differently & now I’m hearing it from others, thank goodness. I am post 2nd injection & feeling really wiped out, but hanging in there.
If it‘s any consolation, I‘ve tried both the cyano & the hydroxo. The hydroxo can sting. But I was feeling desperate & bought a box of 100 - I‘ve got quite a few to use up. 😂
Yes I also have a cough that goes away when I get enough B12. It's a strange cough though, almost like I need to cough but can't!
Yes! I don’t know why I didn’t make the connection earlier. I feel the hearing loss is connected as well, but is probably permanent. I saw an ENT last week who saw my B12 levels and firmly stated there is no connection to the cough or hearing. It was stunning. My own body and research clearly tell me differently. I’ve lost so much faith in doctors.
How can the ENT say there is no connection? Unbelievable!! B12 deficiency causes some very strange and unexpected symptoms and I believe many doctors don't care to familiarize themselves with it. It's so annoying. If B12 fixes it then it was caused by B12 deficiency. I really hope the injections help with your hearing loss and your other symptoms.
Thank you! I know. I just shut down after that. I realized I knew more than she did - she wanted to put a catheter up my nose and down my throat after that to run a 24 hour test for PH & reflux. My body just wouldn't cooperate. I started to cry and told her to stop. It was so painful and I couldn't swallow properly. All I could think at the moment was she had coldly told me I was going to go deaf - that there was no treatment for my hearing loss since my tests were normal. I knew that there is a thing called hidden hearing loss that is neurological and sometimes linked to B12. And while they don't have a cure at the moment - there are ways you can compensate with hearing aids that block out background noise. It's a beautiful, expensive practice with a lot of high end equipment and she didn't even know this. I just couldn't let her treat me or put me through any pain. I paid my bill in full and left. I think there is a kind of trauma many of us will need to work through along with everything else.
Oy vey😮.... hearing loss can be a double whammy: low B12 and/or low thyroid. Btw, has an ENT confirmed that your hearing loss was not caused by impacted earwax???
Yup. It‘s been a creeping thing over about 5 years and started with not properly understanding my daughters. It‘s worse in my right ear (can‘t hear much when I lay on my left side) - but my ear exams & hearing tests don‘t reflect it. That‘s when I found info on „hidden“ hearing loss - caused by nerve demyelination. 😳
Oh my! That sounds like a very traumatic experience for you. My heart goes out to you. I had a similarly traumatic experience with a gastro who was more interested in emptying my wallet than helping me discover all my symptoms were related to b12 deficiency. Sigh. Fingers crossed that b12 injections will help your hearing loss and thank you for the information on GABA!
Hi again SigNi,I did have a chronic cough about 4-5 years ago, long before I was diagnosed in 2019.
Hi,
A few links that might be of interest...I'm in UK so hopefully these links will work for people not in UK.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members in other countries.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring and an online contact form.
Testing for PA
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Gastrin test
labtestsonline.org.uk/tests...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Films about PA and B12 deficiency
PAS conference 2019
pernicious-anaemia-society....
Films about B12 deficiency
I am not medically trained just someone who suffered unrecognised B12 deficiency for years.
This is amazing. Thank you.
This next link is about dietary intake of B12 and was produced by DGE, German Nutrition Society. There is a list of references at bottom of article. Although about dietary B12 intake there were some interesting points that could be relevant to some people with non dietary B12 deficiency
Thank you.
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