Hi everyone. I have been ill since March this year and am at my wits end. Please can someone out there tell me if this timeline and symptoms resonate with anyone? My normal blood tests shows normal range of B12: 388 (189-883) and Folate: 6.8 (4.8-19), is it possible to be deficient and still be in the normal range? Below is a timeline of symptoms, it is very long, but if anyone has the time to read it all, I'd be grateful for any comments. And just to add to that long list, I was bedridden for a lot of the 3 months that the timeline refers to. A range of blood tests have all come back normal. ECG normal.
TIMELINE OF ILLNESS
March 19th 2019 – suddenly fall ill when out walking the dog.
Symptoms:
•sharp stabbing lower left back pain
•dizziness
•severe light headedness
•feeling very weak
•muscle weakness
•limbs being very heavy
•loss of voice (due to weakness)
•shakiness
•loud buzzing in head (especially right ear)
•struggle to concentrate
•prickly arms and face
•impossible to sleep
•nightsweats
•low blood pressure
March 27th 2019
Symptoms getting worse, now also includes:
•tightness in chest
•abdominal tightness
•weak voice
•extremely dry mouth at night
•unsteady walking
April 2nd 2019
Symptoms getting worse, now also includes:
•very metallic taste
•difficulty temperature regulating
•difficulty breathing
•nausea
April 9th 2019
Sudden onset of throat/chest infection
. Spend the next 10 days on Amoxicillin and then Co-omoxiclav
April 30th 2019
Symptoms getting worse, now also includes:
•light-headedness getting worse
•a crushing sensation in the head
(This feels like having a 100kg weight on top of my brain, making it impossible to move even a few footsteps)
May 12th 2019
Chest infection returns: another course of antibiotics (5 days this time).
May 25th 2019
New symtoms:
•muffled sounds
•exhaustion, feels like I’m about to collapse
May 29th 2019
Felt better, decided to go the gym for some gentle exercise (40 minutes).
May 30th 2019
Symptoms getting much worse, now also includes:
•the crushing weight sensation in the head getting very severe (spent the next 14 days in bed)
Early June
New Symptoms now also includes:
•strange sensations/pains in the upper part of my body, lots of places have pain, an indescribable feeling and location.
Early June 2019
New symptom:
•breathing difficulties
June 22nd 2019
New symptom:
•Sudden onset of jaw locking (no obvious reason – and lasts 2 days)
•Loss of sense of smell (about 50-75% of smells are gone)
July 5th 2019
New symptom:
•Sores in corner of mouth
•Short-term memory problems
Anyone had any, many or all of these symptoms???
Thanks in advance!
Written by
nevermindme
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Sorry to hear of your health issues! Many of my symptoms are similar to yours, some are different. However, I was just diagnosed with PA [Gastric Cell Anti Bodies, High Homocysteine and High Methylmalonic Acid (MMA)]. My Serum B12 levels have been consistently in the 600 range with Folate around 20 for many years so no one bothered to test me for PA. With my B12 and Folate levels being substantially higher than yours, I would say that it is totally possible that you have PA. In all honesty, I thought I was dying as every time I thought I couldn't feel any worse, new symptoms would appear and I'd feel even more ill. I am not a medical professional but now that I know what to watch for I try to advise anyone who will listen to ask their doctor to test for not only B12 and Folate but especially MMA and Homocysteine. At least here in the USA we can order our own MMA tests through lifeextension.com/. My mother's GP refused to test her MMA levels even though she has numerous other autoimmune issues and debilitating peripheral neuropathy and a child with PA. I implored her to order the test, herself, then to bring the results to the GP and beg for B12 injections (she's nearly 80 so I strongly believe that she would benefit even if she didn't have all of the other underlying issues). I also strongly believe that my mother-in-law recently passed away after quickly declining after her two cataract surgeries. The nitrous oxide probably depleted her B12 to the point where there was no chance of recovery without B12 injections. I only wish I knew then what I know now, perhaps she'd still be here; she was a delightful person with a generous spirit and kind heart.
I certainly hope that you get real answers to your health problems very, very soon!
Thank you so much for your reply and sorry to hear about your mum! Can I ask a really stupid question, how do you get tested for PA when B12 is normal? Is it the Gastric Cell Anti Bodies, High Homocysteine and High Methylmalonic Acid (MMA) that you mention? As far as I have understood it PA means low B12... clearly I am wrong there! I have felt like I have been dying too. It's been the worst 3 months of my entire life! Did you have the breathing difficulties too? If so, can I ask you how exactly it felt if you are able to describe it? And crushing sensation on the brain? How about low blood pressure? I'm intrigued to hear more!
It is my understanding that MMA is the best marker. My GP was thorough and tested for antibodies to parietal cells and intrinsic factor, the antibodies to parietal cells is what brought me the label of "pernicious anemia". However, if your MMA is raised, it might be wise to treat as if PA since B12 deficiency, no matter what the cause, can be deadly if left untreated. That being said, starting B12 injections (if required) sooner rather than later can help someone along the path toward healing and help prevent any further damage. Hoping you find a knowledgeable medical professional to help guide you to better health.
Sorry to hear you so ill. I've had alot of those symptoms akso being bedbound. My serum b12 was low. I tested negative for parietal cell antibodies. Si am told not PA. The only thing so far that had alleviated some of the symptoms you describe has been b12 injections and time. 9 months in.
Did you fall over when walking your dog? Or just got ill. I ask because I had a fall and one neurologist thought post concussion syndrome as well. Very similar symptoms. Have you here taking supplements that would skew the bloods? Look up functional b12d. Have you been referred to a specialist or getting treated with anything? Akso has your spine been investigated because of the stabbing pain to check discs that could affect your nerves? Push for more tests . I know difficult when very ill. I would stop exercise apart from walking until you know what's going on. Especially after what happened to you. I went for a longer walk and ended up with a 8 day headache/migrain. I'm back to 9-1product mins around the block! The longer walk was only a mile. So a shock as I used to walk cycle every day. Keep us posted . Hope you get the treatment you need .
Hi there and thank you so much for your reply. I didn't fall over when walking my dog, but I was extremely lightheaded and muscle weakness was bad. The stabbing pain has since disappeared, but it felt very much a part of the other symptoms I had rather than a problem with my back. I did take various sleeping tablets and supplements which I believe have lowered my blood pressure and also skewed things up, but so far my GP have not found anything wrong in my blood tests. How low was your B12 by the way?
My first ever serum b12 blood test was 106 in October 2018. But as we know that only shows what's in you blood and not if it's active. I had severe neurological symptoms initially so I expect what was active was even lower. There was a delay of 5 weeks from virtigo attack and First injection. In hindsight I really don't know why or how I was pushing through the fatigue and headaches (not awful headaches but the sort when overtired or travelling for too long)???and why oh why did the gp not do bloods including b12 when I had a bad fall in August and I said I've been ridiculously tired. (Probsbly why I fell! !) The trouble is when you gradually getting so ill you cant think for yourself. It seems crazy now I didn't insist????hope you find a solution soon
You haven't developed PMR, polymyalgia rheumatica, have you? A lot of the symptoms cross over with anaemia. I have both and it's very difficult to distinguish which is caused by the anaemia and which the PMR. The fact you have pain in the top half of your body and in various other places seems to point to this. Google it and you may want to google fibromyalgia, very similar but an entirely different illness. PMR, usually attacks people over 50 and fibro under 50. Anyway, look at the 2 and see what you think. Incidentally there is a link between PMR and anaemia.
I hadn't either. You don't say how old you are but if you're over 50 it may be PMR if under fibromyalgia. Just mention to the doctor if it could be. For some reason doctors are reluctant to diagnose either of them., possibly because there's no cure, although months or years on steroids does keep the pain down. Good luck. Hope you get it sorted.
Just got a print of my results today and B12 is 250 gone up from 207 last year and ferritin is 22 up (14) from last year and folate 4.3 (2.9)
Last year they said I was ok and didn’t push it with them but lately the last few months I have been struggling more so again so very surprised the see the results was better than before. So annoying as I share a lot of your symptoms exhausted, pins and needles weak and the foggy head is just so much.
I am not a doctor but there are many doctors who say that 250 is low and they recommend treatment based on that number alone and if you have symptoms of deficiency they say to treat based on symptoms. Have you seen Dr. Chandry's website? b12d.org/ I believe that you will find a lot of helpful information on this site.
Mine was 313 when I was finally diagnosed. Over the past 6 years I have really struggled with fatigue. B12 went as low as 189 and as high at 1202. In May of 2018 the neurological issues started and were increasingly getting worse until I was finally diagnosed in February of this year. I had to demand MMA, homocysteine and the IF antibody test as I was told I wasn’t anemic, my b-12 was normal, so there would be no possible way to have a b-12 issue. Well my Dr apologized for being so very wrong.
Hi there, thank you for your reply I'm curious what sort of neurological symptoms you had? And how did you get B12 injections when B12 was normal? Did you have to go private?
Hi, symptoms included; numb, tingling fingers - no sensation of touch ( cotton wool test ) from tips of fingers to just below elbows, numb feet, loss of balance / falls - especially when washing hair in the shower and in the dark, tingling tongue & lips, numb feeling across my back.
Became even more concerned when I lost bowel control ( NOT associated with diarrhoea )
Was referred by GP to a general medical consultant (NHS) who, by his own admission, "knew nothing about B12D" !
I had taken along printouts as advised by this forum, and drew his attention to the guidance which advises that treatment should be administered according to symptoms and not necessarily results of serum B12 test.
He prescribed loading injection regime and I insisted on being permitted to continue them " ... until no further improvement " as per BNF guidelines for patients with neurological symptoms.
I had these for many months then started on the once every eight weeks injections.
Unfortunately after a couple of months, I noticed my neurological symptoms beginning to return, couldn't face a battle with my GP practice, so I sent off to Versandapo for B12 ampoules & British medical suppliers for needles, syringes and sharps disposal bin.
I now self inject weekly in addition to the eight weekly one given by the nurse at my GP practice.
For the first time recently, had to address the problem of disposing of the sharps bin !
Went to my local branch of Lloyds Pharmacy , they took it, no questions asked, and to my delight issued me with a replacement !
I have to say that I really had to be polite but very firm and assertive in order to get even as far with NHS medical staff as I did.
I put everything in writing, especially drawing their attention to the risk of Subacute Combined Decompression of the spinal cord if my condition went untreated.
I am not naturally an assertive or forceful person, but my health concerned me so much that I knew I had to fight to try to get well.
This was my personal experience, but I hope it's useful and that you are able to access the help you need and deserve.
My first Hematologist said there was no way all my symptoms were b-12 related because I wasn’t anemic. When I ended up taking my injection schedule into my own hands I greatly improved. For some reason I am back to feeling awful again when my new Hematologist put me from weekly to 2 weeks. It’s so weird. I am seeing him tomorrow so hopefully something will change.
You do not have to have PA to have low B12. I had almost all the symptoms you lift up. My B12 level was 600 but that was after I had been using sublinguals. Once on good doses of B12 and folate, the symptoms improved substantially.
Really? Were your symptoms gradual? Did you get the crushing sensation in the brain as well which made it impossible to move? And what about breathing, if you had problems with that, would you mind describing exactly how it was and when it occurred? I did start to take B12 and folate tablets about a week ago, but I am not sure how good tablets are...
I kept my sense of smell. I had the pressure on top of my head. Constant sizzling in the head. Couldn't walk proper lyn for ? 8 weeks. Vision was very down. Stuck to the spot with heavy legs. Couldn't rely on my legs supporting me. Tremors and her Jerks in a sweat at night. Nausea. Headaches/migrains . Ultra sensitive skull. Tightness if skull. Water moving in the bath ( it wasn't. Exhaustion and I simply could move. That didn't last long . Light sensitivity noise sensitivity. Vibrations in mouth and nose. Neck spasms and so the list goes on. Numbness over face. Fatigue with a big F. Palpitations. Thudding heart on little movement. Such odd sensations but I've read most on here so not unusual. Even if gslore draw a blank expressions and think you are depressed
god bless you as i know how awful you feel. Your case is so so like mine and my B12 level was 1,100 and i had never ever supplemented. I researched and believe i have functional B12 deficiency where the level is high in my blood because it is just circulating and not getting into my cells. I hit rock bottom a year ago when i began losing the power in my legs. I began self injecting every day last November and i am getting my life back....i am even back to work two days a week. The injections keep my levels ultra high and some is obviously getting through. B12 cannot be overdosed so it is worth trying to do injections to see if you improve. xx. J
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I haven't heard of PMR before, but will look into it, thank you! 
Pernicious Anaemia or Vitamin B12 Deficiency
Information about Pernicious Anaemia and B12 deficiency from the Pernicious Anaemia Society
Could I have Pernicious Anaemia?
Could i have pernicious anaemia 
Do I have Pernicious Anaemia?
