You know it’s B12 deficiency because your NHS blood test proved it. Then you had 6 loading doses on the NHS. Then you went to Cambridge. Had a chat with one of the most knowledgeable men in the U.K. about it.
If you truly want to find out and understand our illness then buy Dr Joseph Chandy’s book Vitamin B12 deficiency in Practice. It is one of our bibles. I have sent copies to universities so medical students understand it. Other members have given copies to GP’s.
It gives case studies. Gobz it is a journey. Yes, COVID is a virus and affects the whole body. 70% of the immune system is in the gut. Where does PA/B12D originate ? In the gut. There is something called the Gut Brain Axis. Google it. To date there are 8 different pathways or connections between them. Learn about that. The more you know about anatomy and physiology, the easier it is to understand and accept what it is. How long recovery is and your mind may feel more reassured.
Please know that quite a number of us were bed bound for months. Severe vertigo and unable to coordinate our bodies. Just missing that powerful vitamin. We definitely could not run before we could walk. We had to rely on other people to look after us. Cook for us, bring us drinks, do our shopping, washing and yes, washing ourselves and toileting was bedlam.
My point is though from what I’ve read often people with ms can have low b12 too so how do you know it’s one and the other when all your symptoms match both especially the urination issue.
Did a urine dipstick test and it’s still showing blood, yet they can’t find out why despite ultrasound cystoscope and mris. It’s scary I am still bleeding 4 weeks on. None of my drs agree. Gps saying it’s either my Humira (although I’ve not injected in a month now and still no better) or cancer despite unable to find any. My rheumatologist says it’s not the Humira despite this being a listed side effect swears blind it’s not. Klein says it’s PA and gps say it’s not that. I just wish they’d agree. I am following Klein an advise though.
Did anyone take anything to lower their stress until the b12 kicked in? I keep asking the dr for something telling them I am finding it mentally hard but nothings been prescribed.
Yes, there are many misdiagnoses for PA/B12D which include M.S. and Parkinson’s. Gobz, I will say it as it is. So, the NHS is geared to pharmaceutical companies. Who pays for research ? Big Pharma. So, who decides what gets researched ? What illnesses get promoted ? Which get relegated ? There’s no money in PA/B12D. So, doctors do not know much about it.
There are the few doctors who do know about it and it is usually because they have a personal connection to it. So, yes, trust Dr K. The other thing to note is Dr Joseph Chandy’s back story, him treating patients as they should be with B12 nearly cost him his job. The General Medical Council found out and he had to answer to them. Told to stop. Patients relapsing left, right and centre and back in their wheelchairs.
I am sorry, I do not know why you have a trace of blood and severe pain. Building up to another diagnoses takes time. No, doctors do not always agree which can be difficult for patients.
Lowering stress, not using the internet so much, being in nature, know what is important and what’s not. Like housework, who invented that ? Over the counter, CBD oil, or St John’s wort or tryptophan or valerian for relaxation. See how you go with one of them. Commit to one then try.
Can I remind readers (Narwhal10 already knows) that if you want copies of the book for doctors or any other healthcare professional in UK then we (B12d) can send it to you or them for free. The electronic copy is always free b12d.org/book and there are instructions on that web page to obtain a free printed copy.
We don't send unsolicited copies because doctors receptionists will put them straight in the bin. If your doctor is reluctant then ask for one to be sent to you and hand it over personally (to the doctor, not front desk).
It's one of the main uses we put donations towards - thank-you.
Although the effects of B12 deficiency are usually symmetrical (both sides of the body), there are forum members who mention symptoms affecting one side.
If you search online for "misdiagnosis B12 deficiency MS" that should show some interesting articles.
Some articles may have details that could be upsetting to read.
I think you have evidence of B12 deficiency from blood tests.
"and they can’t work out why I have bladder issues."
I'm currently struggling with bladder issues so sending an empathetic virtual hug.
I'm sure that part of the problem for me is nerve damage from being untreated for B12 deficiency for many years.
Search online for
"B12 deficiency bladder"
"B12 deficiency neurogenic bladder"
"Did a urine dipstick test and it’s still showing blood"
Have you looked into the possibility of interstitial cystitis (aka painful bladder syndrome)?
It's difficult to diagnose, blood in urine is a possible symptom.
Are you having frequency? Pain? I wouldn’t know it’s bleeding except for dipstick tests showing lots of trace blood. It’s not visible to the naked eye. Have you ever done a dipstick test?
Can I ask how far along in treatment are you and have you seen an improvement with regards to your bladder?
Honestly I wonder if it was ms would my first 6 injections have made me normal for 6 weeks and symptom free? Or does that suggest b12? I long for those normal days again.
Have you altered your diet at all? I keep being told no fizz, chocolate, caffeine, juice, vinegar etc…. I’ve stuck to it religiously for a month now but god I crave a drink it’s all so stressful.
I had many investigations first as I suspected cancer but nothing like that was found.
I had blood in urine more than once but it wasn't visible blood. I seem to be prone to infections including thrush...I suspect this again is linked to B12 deficiency as deficiency can affect immune system response.
I'm an older woman who's given birth so urinary problems not unusual.
I do physio exercises to strengthen pelvic floor. In most parts of UK you can self refer to nhs physio services.
I decided to go on the bladder friendly diet myself...I don't think there's much chance of me persuading my NHS GPs to consider IC/PBS.
I drink more water...in my case at least 4 glasses a day. I have cut out caffeine eg no coffee, no tea, no chocolate. I've cut out alcohol and I try to avoid acidic foods so no citrus fruits, no vinegar, no tomatoes etc.
Can make it challenging to get necessary nutrients so best to seek advice from doctor.
I read this book "The Interstitial Cystitis Survival Guide".
Bladder Health UK charity have a good helpline which is sometimes answered by a specialist nurse.
Gobbozoid, the situation and symptoms you describe are very similar to my own.
After 18 months the only thing that has been confirmed is that I’m B12 deficient and that I probably have PA (differing views from various medical professionals). I’m now on EOD injections (self administered) and the associated cofactors. It’s very early days and it’s been a bit tough but I’m sticking with it. Simply because nothing else has been found despite numerous tests.
However, I’m more comfortable with my current position because those tests have put my mind at reasonable ease that it’s not likely to be ‘something else’.
Through a bit of luck, persistence on my part through my GP, and spending a fair bit of my own money I have got to where I am now.
Some of my first symptoms were urinary. I saw 2 private urologists who could not find anything wrong with my bladder, kidneys or prostate after numerous urine tests, a cystoscopy and other examinations. There has always been a trace of blood in my urine but not visibly peeing blood. However, neither of them made any direct link to B12 deficiency but my own investigations suggest that nerve damage could play a part in urinary disfunction and many UTI antibiotics don’t help either as they attack folate. To this day I wonder if several courses of Trimethoprim accelerated my B12 deficiency.
Early on, before B12d was discovered, I saw a NHS neurologist who went down the MS and Parkinson’s path initially. As a result I had head and spine MRI tests, and a DaTscan of my brain. Plus nerve conductivity tests. Thankfully nothing was found. The neurologist somewhat reluctantly conceded that perhaps B12d deficiency was the cause and he did put me on 4 weekly B12 injections.
I saw a private ENT consultant as I was having severe sinus-like pain but again nothing was found despite yet another head MRI. He acknowledged that B12d could be having a bearing on my head pains.
I’ve been to my opticians twice and had two new prescriptions. My eyes aren’t great but nothing untoward was found. Again, B12d was acknowledged as possibly paying a part in my blurry vision.
I’ve lost count of the times I’ve been to my dentist complaining of sensitive teeth and toothache in the last year. I even had a tooth removed which was probably unnecessary in hindsight. My dentist mentioned that nerve damage can present itself as tooth problems.
Because of symptom similarity, I convinced my GP to test for diabetes and Coeliac disease. Both blood tests were negative.
What I’m trying go to say is that from my own experience it’s worth trying to get all possible options explored and ruled out if you can put up with the hassle, delays and fight with the NHS, or cost if you go private through frustration.
That said, I remain open minded that it could still be something else, or something additionally, but for now I’m treating as B12d & PA. There are days when I feel awful and then the next I’m not too bad and can function reasonably normally. The unpredictability is the most frustrating thing.
How long have you been on the treatment and is it helping with the urination? I sometimes feel my frequency has decreased but I still feel sore as hell and am still getting trace blood. How much of your condition especially bladder wise has cleared up please.
It’s a bit too early to tell to be totally honest. I only started SI EOD last week! Prior to that I had the 6 loading injections about 6 months ago and have had a B12 injection every 4 weeks since then. I’d hadn’t really noticed improvements in any of my symptoms, hence biting the bullet and going to EOD.
That said, I do feel like I’m peeing more normally in recent days. Whatever ‘normal’ is? It’s been so long!
However, I’ve not had the urinary pain you describe but for 18 months my peeing has been erratic. Some days I go every hour, sometimes I go but still feel that I need to, and other days I hardly go at all and feel little sensation to do so. It can be a little alarming.
Some of this could be related to anxiety but to me it feels like nerve related. Because this happens differently day to day it’s hard to be convinced that it’s an infection and I’m reluctant to take more Trimethoprim, which is my GP’s stock solution.. I’ve had UTIs in the past and they tend to be painful with a fever. I’ ve not had that this last 18 months.
Have you had a sample tested for cultures to see if you have an infection? Dip stick tests are not conclusive.
As Sleepybunny has said, it might be worth considering a bladder friendly diet. Cutting out caffeine is a start. But many foods are to be avoided. I’m sure a quick Google will find the information.
I have been on a bladder friendly diet for awhile. Like you I have days where I pee non stop and days where I pee every hour or so. It changes massively making it impossible to make real plans.
I paid for an expensive urine test myself as gps could not grow anything and that come back negative for infection 3 times as well. It doesn’t hurt to wee. Just ache in my bladder in general.
Unlike you initially my bladder improved to normal when using b12 I suppose that’s why I now wonder how related it is as I’ve had more shots than ever, close to a months worth eod and yet I am still in a bad way. I’ve been worse but this ain’t great.
4 years ago when this all started I had all the tests to rule out anything else and they could find nothing….
Have you tried keeping a diary, so you can see if the changes coincide with a jab? It might help to calm your anxiety, if you can recognise positive changes.
I'm starting to get a feel for what is reversing out and what is 'you've done too much, have an extra jab.'
My GP also suspected MS, but I have responded well enough to the B12 injections that we're almost ruling that out. Well I am, but he's referred me for a Neurology appointment and still wants me to attend - I did say I wouldn't stop SI whatever the outcome! I had the same blurred vision as you, predominantly in the left eye, and saw an eye specialist in February. Couldn't read the last 2 lines on the chart. At my second visit in late May I could read even the bottom line of the eye chart without pausing. I felt that was measurable proof the EOD B12 was healing my nerves, so am more able to accept the painful healing symptoms such as knives in my shins, gastritis, etc...
After 8 months I've got an online questionnaire to complete, possibly to see whether I'm still alive...🤣 Well, to triage me, I guess. I was told not to hold my breath waiting for it.
MS is a description of symptoms, as many medical names are (look up the name in a Latin dictionary, you will laugh at English translations like "outer ear pain" and "abdominal pain" which sound terribly grand in Latin). In MS, an MRI (or originally post mortem) would find multiple scleroids (dark patches, areas which don't have the necessary fatty layers called myelin sheath) in your spine and possibly brain.
B12 deficiency (B12d) is an explanation for a cause. Two different ways to describe the same thing (if your B12d takes the neurological route). Think of MS as stage IV (4 - sorry that Latin again) of neurological deterioration due to B12 deficiency. Neither name is wrong, it's just that with a diagnosis of MS you feel helpless, and with a diagnosis of B12d you might still be able to reverse it or stop it progressing (no promises).
Dr Chandy and I invented a new condition "MS-like presentation" because we were told that MS is incurable and here were patients clearly being cured (not all of them though). However the reality of it is that it's B12 deficiency along the neurological progression. Other possible progressions include connective tissue, endocrine system, autoimmune, and DNA, and all go from mild symptoms to severe.
do try to pick up the symptoms early when you haven't suffered too much and when it's easiest to cure.
Wow! That is quite an eye opener HugoMinney. Thanks for the explanation. I wonder whether GP training will ever instate/reinstate comprehensive education in vitamin and mineral deficiencies.
If all your issues started shortly after covid, it is likely to be a treatable progression of B12 deficiency due to virus affecting one carbon metabolism and methyl groups sciencedirect.com/science/a...
Magnesium may help with both cravings following diet changes and anxiety. Best wishes
That’s what I thought originally that it was Covid bladder/covid cystitis. But now I am scaring myself it’s ms. The internet is both a blessing and a curse when sick. I asked my gp for something to aid my anxiety but was given nothing. Thing is I thought deficiency after Covid and Covid bladder etc get better with time. For me it’s like my b12 won’t come up unless I inject. Just frustrated that in February 6 injections seemed to cure all symptoms for over a month. Now 15 in and I am mildly at best better. But suffering awful bladder pain.
I'm afraid the reason that a lot of people have long covid symptoms is because the body cannot do what you say and get better with time, without some help. Bear in mind that any stress on the body will use your B12 faster, and you likely have no stores to use, so are dependent on those injections. You know B12 is needed else you would not have reacted to your loading doses in the way that you did. And lack of B12 will add to your anxiety. How often are you injecting and are you using oral/sublingual in between, and are you taking folate (methylfolate)?
Sorry, just noticed the month into EOD note. How are your iron and folate holding up? You could ask GP to test.
Iron and folate will be monitored in another 2 months. Honestly I can live with a lot of the issues but the bladder pain’s awful. Just went on a car journey had to go out, and every bump or speeding and breaking felt like my bladder was on a rollercoaster. Your right the b12 made a difference before it genuinely cured them all for 6 weeks. I just fear it’s not happening this time and I suppose clutching at straws. 🥲
Try not to stress too much, B12 will work, but it takes time and patience and as little stress as possible. Can you drink cranberry juice? Good for bladder, might help a bit. Best wishes.
Gobbozoid - Both conditions MS & PA/B12D cause demyelination of nerves, hence they have very similar symptoms. Both conditions cause lesions or white matter on the spinal cord (brain). You usually see the lesions in those w/ Advanced B12 deficiency which usually occurs w/ SubAcute Combined Degeneration of the Spinal Cord (SACD). Advanced B12D lesions form a symmetrical pattern on an MRI and are mirror images to each other. They appear in pairs. MS lesions are scattered and do not form a pattern. Trialing B12 injections would be a reasonable option in your circumstance. I believe from your below post you are on B12 injections. I only shared the Advance B12D info, as I believe the lesion patterns definitely speaks either MS or PA/B12D.
Should I ask my gp on the 18th if I should could have an mri to see if there’s nothing showing? I am a month in to eod. I hope it’s just b22 deficiency…. Feel so low.
Gobbozoid One month into injections is really not a long time. You are still in the early days. Are you experiencing reversing out symptoms? Are your symptoms improving? If your symptoms are improving, I would think it could be contributed to the B12 injections. You could pass the idea by your GP and get his thoughts. Unfortunately, B12 recovery is a marathon, not a sprint. I recommend you join these groups ; Pernicious Anaemia/B12 Deficiency - Support Group (FB group). PAS society - They do a lot of advocacy work in the UK and it is my understanding they are a part of a really big international B12, pernicious, anaemia, and autoimmune gastritis research group called CluB12 . There is a small fee to join. Their newsletters are wonderful.
The dr who diagnosed me said it could be reversing out. My frequency is down occasionally still but bladder is agony still and still trace blood. But everything cause wise has been looked at and nothing found.
Gobbozoid - UTI’s are a known symptom of B12 deficiency. Could you have a UTI ? Did the doctor run tests for bacteria in your urine ? Could you have interstitial cystitis which can look like UTI? It is thought IC can be related to B12D , but no good research on the subject. Are your folate levels solid, adequate folate needs b12 to convert and adequate b12 needs folate to convert.
Hundreds of urine tests including a private microgen dx test there’s no infection just inflammation of bladder. Previously after suffering 3 long years the b12 loading dose rid me of it completely. But then 6 weeks later it all creeped back. Done a months worth of b12 now and sadly this time still suffering. But I was put on antibiotics and it’s been incredibly stressful so maybe I am burning b12 quicker than I can inject it?!
Gobbozoid - If prior loading doses helped perhaps your folate is not optimal, as no matter how much you inject B12 if folate is not optimal your B12 injections are wasted. I would ask the doctor if ED injections are warranted based on prior results. In the FB group I recommended you join, it is shared, if you do have IC, you may need a hydroxocobalamin that is acid free and if you are taking a B complex, you may need to take one without B6. It is thought that B6 supplements can cause a bladder flare up. Please remember everyone has different triggers for IC, and I am not saying you have IC. Were you on injections when taking the antibiotics ? I only ask because certain antibiotics will deplete B12, however if you were on injections then they should not deplete B12 as injections go directly to the blood stream, bypassing the stomach where absorption takes place. Anxiety from the stress is the component that needs to be calmed. Anxiety is very common w/ B12D or in general when we are trying to seek answers on our personal health conditions. One last thought: Long covid symptoms are identical to B12 deficiency and it is known that Covid depletes B12.
Yes I have been for the last month at least. Although it’s been a very stressful time due to other factors out of my control and I had antibiotics (strong ones) for the first week. Maybe it’s reversing out that causing so many problems.
Sorry you're feeling so poorly. I was experiencing annoying uti symptoms particularly in lead up to b12 def diagnosis 8yrs ago & theyd find blood,etc in samples at timeswhen i was/wasnt having symptoms.On recent looking bk thro Drs notes looks like on/off occasional since toddler. My iron stores were also low at coinciding times if I happened to.have blood tests, ferritin 11 & underrange quite a bit, but never told Do you know your ferritin level? Iron panel ?I've read not having enough iron can allow things like candida to.overgrow which can give rise to urinary symptoms. Due to other health issues I did couple candida tests along the way and they were both very high positive. You dont have to have the traditional symptoms of thrush,etc it seems.
Having said that as my iron levels improved and then got the b12 diagnosis & had injections uti symptoms have resolved. So whether the iron and b12 raised my immunity and I fought of uti probs better or whether it was an issue with the nerves etc I can't say for sure.
I did often notice an urge,slight irritation to wee more after monthly injections,wasn't sure if that was just a minor reaction to injection as nothing would come of it.
Have had the vision issues in one eye too, migraines,numbness,stamnering,confused,etc& i had concerns of MS,a family member has it, but they def improved and resolved on b12,but I didn't find it a quick.fix. on monthly inj it took 2 and half yrs before the tingling numb feelings went completely down left hand side.
Was swopped bk to tablets,but recently bk on injections as neuro symptoms returned with avengence, but since loading dose and 1st 2mnthly Jan I'd say bladder area feeling raw again but no other issues with waterworks so maybe it's doing some healing there!
We know how frightening these symptoms can feel & you have to do whatever eases your mind,but perhaps try to take some reassurance and comfort from the very wise and experienced folk on here meanwhile...take care.
Ps I was once advised oranges are the best thing to clean out urinary system. I'd have thought otherwise but a urologist had told her?
See I was told to avoid all citrus as it’s acidic. I must say my frequency has improved the last two weeks. However my bladder does feel raw, hurts when sitting, moving and in car when hit bumps etc (crap as there’s more potholes than roads round my way).
It’s reassuring to know u had these symptoms and got well on b12. As I say originally I did. And now presently my frequency is much improved. I am also struggling with fatigue. Today I got up hoovered and cut the grass and now I feel like I didn’t even go to bed last night.
My iron will be monitored again in 2 months. But I am supplementing daily.
Yep,like you, I'd been advised to avoid citrus, but she was told oranges are a great cleanser for all aspects if urinary tract. When looking it up I found conflicting thoughts,some seemed to say the vit c content was excellent fir killing ecoli bacteria causing uni's ,some said they are alkalising others say no no!Can relate to.raw feeling as if someone has scraped it with something sharp and you feel aware of it?
How long ago was your loading dose? I know my iron stores which weren't great before it,have lowered since,which is what seems to happen. Could it be some of your cofactor are needing upping now?
Its horrible feeling so exhausted. It prob doesn't feel that way,but if you hoovered and cut the grass you've prob done extremely well especially if some of those levels are out of sink.
I had my loading dose end of March and still extremely tired. I get annoyed at not doing more than the basics and this last wk managed some extra weeding on top but feel like ive squeezed every drop out of me to do it. Anything that takes any force like digging up some potatoes makes me feel I'm going to faint, I don't give in easily, but know its prob a case of having to not expect too much until ferritin & folate improve & maybe more frequent b12 even. Take care...
like I say co factors being checked again after 3 months. I am topping them up daily. Honestly the tiredness etc I can cope with. This bladder issues make me genuinely so depressed and stressed.
My loading dose was in feb. I was a new man for 6 weeks then went down hill. Begged gp for more, and after another month got another 6 although I was sick during these with flu towards the 2nd weeks worth so don’t know if I got the benefit. Since then I’ve really struggled with my bladder again. I’ve now had a months worth every other day. Frequency is improved but discomfort is terrible. Even when I stand up from sitting it feels like something is tearing in my bladder. Still trace blood and I know my gp will want to investigate for cancer a second time adding to all the stress.
Yes,bladder issues are really debilitating. when yve not got them, it's something u never give a 2nd thought to, then when they're there don't know about you,but it's hard to concentrate on anything else when yre trying to tell yrself u don't need to go to loo! Your Pain sounds so awful too on top of that.That flu certainly wont have helped matters,that was unfortunate. Were there others around u who had that,just wonderingbif that was linked to healing too,have heard of folk getting flu like symptoms after injections?Have you tried eating natural yoghurt/take probiotics, avoid sugar since completing antibiotics? I'm sure it was a factor for me after finding I was given so many as a young child, then again in my late teens.
Could the extra b12 have been fighting off an old infection hanging around and its working its way out?if so let's hope it soon exits!
Do u feel any signs of water infection suchbas fever, nauseous,etc?
Was it long ago u were investigated before?
Really hope u can soon see some difference,take care
it was 3 years ago the really extensive investigation was. I’ve had so many antibiotics before and since it’s ridiculous. When I had the flu it was flu my partner got it as well but it was proper nasty and took us both out for about 11 days straight. No signs of infection just bladder pain 24/7
Sorry for delayed reply...so at least you know it was a flu type virus.Has the bladder pain eased at all this wk? It's awful having to have so many antibiotics. I've been looking thro past medical history this wk & was very similar, lots of infections, antibiotics, obviously low ferritin & b12 issues dating back decades & blood in urine many times on & off. I did notice on an earlier urine sample they found calcium oxolate crystals, has there been any mention of those in yours?
I've had a bit of a read & seems they should be broken down but if they're not it can mean not enough calcium & read in one article it requires b12 too. I have no idea how accurate this information is & will do a separate post on here to see if anyone else knows...butvam thinking could the crystals cause irritation on the bladder which shows as blood?
Have u ever tried probiotics after taking antibiotics, or looked into candida overgrowth issues?
Bladder pain has eased over the last 3 days. It’s mild now, mainly when I lean forwards.
Did a urine dipstick test yesterday and showed next to no blood. Lowest reading you can get. It was previous the other extreme.
Gp still wanted to refer me to urology all over again, but I’ve asked to give it 2 more weeks as it seems to be easing. Not fancying the camera inserted again along with the antibiotics they force you to have afterwards. Especially seeing as last time they discovered nothing and wouldn’t even talk to me. Treated me like a prince of meat and no more.
The Cambridge clinic seemed to think it could all be b12 related. This could all be reversing out. I just have to hope it’s that. I still think the Humira could be the cause I’ve taken myself off it….
Glad to hear its easing,let's hope that's the worst behind you. All sounds a good plan seeing as it's settling,as u say, more antibiotics added into the mix may not help!Oh doesn't sound pleasant way to be treated! Let's hope that was an unfortunate one off. The Cambridge clinic must have seen it before to think that then I guess,so sounds promising. Heara to onwards and upwards for you!
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