Am I reversing out? I’ve had between 3-4 weeks of every other day injections and actually feel worse than ever. I don’t even want to wake up if I am honest. My frequent urination and bladder pain is worse than ever so inflamed there’s trace blood in dipstick tests (they’ve ruled out all other possible causes). I just cried for about 30 minutes solid. I am so depressed and thinking bad thoughts, like I am a burden I’d rather not wake up. Proper depressing stuff.
is this reversing out all symptoms worsening? Previously when I’ve had b12 the loading doses on the NHS I just felt better after each jab so why after a months worth do I wish I was no longer here.
Last few gp appointments I’d asked for something to help keep me calm etc as felt my mental health was spiralling and got nothing.
I don’t know what to do, I just feel something is seriously wrong with me and no one knows what, or what to do. I can see my partner is worried too which makes me feel worse. I am 45 and I feel 85.
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Gobbozoid
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Yes, this is can be a rather hideous time. You can feel like you are dying, your mood can hit rock bottom. Even just walking to the kettle can feel like you are wading into the sea against a really strong current. Flipping and utterly exhausting.
PA/B12D takes quite a bit of time to recover from. I generally say to the General Public that I have something similar to M.S. (Multiple Sclerosis). They understand that. Dr Joseph Chandy’s book Vitamin B12 in Clinical Practice discusses at length. Please show your partner the image.
Most of the regulars on here are aware of my personal circumstances of my biological father. He had both undiagnosed PA/B12D and Coeliac Disease. He was a young G.P. and did not even know what was wrong with him. He must have felt completely overwhelmed, in severe pain, depressed and exhausted. One day, he could not cope any more. So, took his own life.
Mate, cry, swear, feel flippin sorry for yourself. I ain’t gonna tell you you’re not a burden or are. I’m just gonna pick you up, chuck you over my shoulder and carry you the distance.
Some people on here have discussed CBD oil which is bought Over the Counter. Many people report that it relieves physical pain and helps with relaxation.
👍🏻
Comparing Vitamin B12 Deficiency to Multiple Sclerosis
Sorry for your loss. I’m just confused. My gp keeps suggesting my bladder issue is either cancer (which they have ruled out twice) or my Humira. I saw my rheumatologist regarding the Humira last week and he was adamant it’s not that, to the point he got a bit shirty with me and suggested I see another rheumatologist if I don’t trust them. I handed in my letter to him from a well known dr at Cambridge blood clinic about my PA diagnosis and he was like ‘who is this guy it says dr but there’s no letters after his name’. My gp when I gave them this letter said how has he diagnosed this in you?
My bladders been terrible for 4 years at least now. The only relief I got was when I first went on b12 I had 6 weeks of normality so I was sure that b12 was the answer but now I’ve injected a months worth so 3 times this initial amount and god I am worse than ever… what if I am wrong?
I need to be well there are people who need me.
I also wonder if this is Covid bladder. There’s one dr at st Mary’s who specialises in that his expensive to see. Thing is I think he specialises in woman so not sure he will even see me.
I too have been EOD since I saw Dr Klein on 31st May. So five weeks on and I feel rubbish. I had overall nerve pain before as I was diagnosed with fibromyalgia 20 years ago. But the pain is worse and my fatigue is also a lot worse. I am getting low mood in the mornings again and also scared it is my anxiety returning. I keep telling myself ‘it’s going to be a bumpy ride’. As people say the body took a long time to get this way and it’s not going to heal overnight. So I am trusting the protocol. No one else has been able to tell me what any of my symptoms are caused by and how to resolve them. I also had a UTI a week or so after starting my injections, so had to have antibiotics for a few days and it cleared up, so the blood in your urine may just be that. I keep hoping one day I will wake and feel some improvement, but I have been advised to be patient. 🙁
That’s the thing they can’t detect any infection. I’ve had a bad bladder for 4-5 years now since Covid. I always thought it was Covid bladder. But then when my gp gave me those first six b12 shots I thought wow I am normal again. I didn’t believe they would work.
I could put up with the blurred vision, the depression even, but the bladder is agony, even hurts to sit.
My partner who I love more than anything is due to go in for an operation August and I really need to be well. I’ve not left the house in days because of the frequent urge to pee. I am meant to keep our business going… we do dog training and walking. One of our clients dogs is very sick, his names Charlie his a choc lab. Cos she’s elderly she said she can’t help him and was going to have him put down, so his now with us, trying to do physio with him etc to give him a second chance, a chance to live. I’ve walked him every day for 8 years and his truly my best friend. I know his old at 13 but he needs to be given a chance to recover and live. It’s incredibly stressful helping an elderly big dog you love when you yourself feel like death. I just can’t live with this urination issue and although I know low b12 can cause it, I was left years with this issue, I hope it will clear up as it did in February. But what if it’s unrelated and I am left over another year waiting for it to get better?!
I just feel crap and don’t know what to do for the best.
Are you still injecting? When I had my first appointment with Dr. Klein, he advised that it would only be rocky (up and down) for 8 weeks, with no further explanation of what lay ahead... I had my first injection almost 12 weeks ago now and feel worse than ever. I have not injected for 5 weeks...
I am not going to stop injections as I was aware it is a long process. It took years for the damage from B12 deficiency and it’s going to take a long time to heal. Nerves don’t heal overnight unfortunately. So I will stick with it for now.
Still getting up to wee but now just once a night on average so way better than at its worse. I think back then it would be once an hour so I was like a walking zombie.
I’ve also introduced a tablet that helps the gut. It’s helped with my indigestion I was getting.
If you have had bladder problems for 4 years then this is going to be a long term solution. I do not have the answers. Our minds do go a bit awry. The clues are you had 6 weeks of normality when first injecting. What is my body telling me ?
Is the first pee in the morning the most painful ? What happens when I stop-start mid flow ? Pain ? Where do I feel it ? Lower abdomen ? What type of pain ? Burning ? Stabbing ? Throbbing ? Learn to examine yourself. Lying down, just look at your lower abdomen, then with the palm of your hand gently press around it starting from the right side of your body. Find any tenderness. Gently press the area again and hold for 4 seconds. Note if the pain gets better or worse when you remove your hand.
Unfortunately, you are male. Many girls and women are accustomed to monthly events. So, we use hot water bottles, heat pads, TENS machines but that is a cost. See how you fare using these. They may help, they may not. If you have access to a bath, see how you are in it. If you need to urinate whilst in it, then so be it. When you do, see if it is more comfortable or not.
This way, you are getting a lot of medical information.
With regards to your rheumatologist and not knowing who The Doctor is. Meh. If you asked either of them who the CCG’s Chief Executive was or Data Protection Officer was they would really struggle on those vital pieces of information too. Lots of egos in medicine.
Now, Charlie is far more in tune than you give them credit for. They know you are sick but is being obedient, loyal and faithful. You need a chance to recover and live. You need to be well and great bosses/leaders know exactly when to delegate responsibility. You, I need this by then, you do this, get on with it, do not bother me for 10 working days. I need more staff, 2 temps for 4 weeks. You, sort it out.
I understand if it’s the cause it will take time but don’t understand why last time it only took 6 and now it’s lots and nothing.
I don’t have pain when I pee just pain all the time. Sadly no bath. The Cambridge clinic said it would take 3 months to feel any better but again I worry this isn’t related… but then the injections worked before. So confused. I worry it’s Covid bladder but not sure why b12 would help.
Not sure if the sadness I feel is to do with my pain, or low b12, or just sad for Charlie or all 3..
The root cause of sadness is often extremely difficult to establish. It is most likely to be all 3. Many of us report that there is a period where we are shadows of our former selves. One person painted themselves to explain. I think the piece was called Ghost.
With regards to your pain all the time, I feel it far better if I private message you to maintain privacy and dignity. Male anatomy is different from women’s. I will await your response, so that I know that you are open to discussing this very personal symptom behind closed doors.
Later "Old Speckled Hen" - still me, but laughing this time.
Recently "Hot Dog" - not me at all !
Painting how I feel has been therapeutic. Being able to paint the one thing I was never prepared to lose. So many things I was no longer able to do, back in the "Ghost" days.
Narwhal, so very sorry to hear about your dad. Wish he had had the support that we have. This forum is a lifeline - just knowing this is survivable, knowing it does get better because others have been through this, and can relate to you, is everything.
Gobbozoid : it took me a long, long time to get to this level of health. The people here helped me.
I was also very lucky with the GP I had. She recognised my lack of response to B12 treatment and found the cause to be, in my case, functional b12 deficiency. After that, even given frequent injections (twice a week), it took so long to improve that she sent me to haematologists, gastroenterologists, neurologist etc etc to rule out any other cause. None was found- but a relief to know there really was nothing else.
So I just kept going ....
It took two years for my folate and ferritin to stabilise at better levels (they both still need monitoring), two years (vitamin D and Raloxifene on prescription) for my spinal osteoporosis to reduce to osteopenia (still being monitored every couple of years) and three years for my MMA to drop into range (after 6 MMA tests, now not being monitored).
I now self inject B12 twice a week - and don't want that monitored.
Ensure that, for peace of mind, all that needs ruling out has been eliminated. The very first test I had, back in 2015, was to discount bowel cancer as the cause for daily diarrhoea. Glad that this was done. Sorry that so few of the medical professionals I have met are unaware of the real range of B12 deficiency symptoms.
So far beyond just tiredness that there is no adequate word. I no longer need 14/15 hours' sleep or need a 3-hour nap because I did a supermarket shop. I am now, let's say, normalish.
Hope you are able to take heart from this. Wishing you well.
Thank u for your words of kindness. I suppose I just want my gp to leave me alone as they didn’t want to help me with my PA nor believe I need b12. But they are putting me through cancer searches for a second time. The camera in the bladder last time was horrid and just showed inflammation. Then they stopped trying to help me. Now they are doing it all again… it’s exhausting getting poked and prodded all the time. The added stress and they put you on antibiotics every time both of which drop b12….. it’s just exhausting.
Antibiotics - yes, I had to have them too, as I was prone to infections and slow to heal in the early days. And again when they suspected SIBO (small intestine bacterial overgrowth). Each time, I would have a constant headache and vertigo if I lifted my head up. Just lying on the sofa as if I had the worst hangover ever. Something that hadn't happened prior to having B12 deficiency, so likely the result of antibiotics depleting injected B12.
Not easy this, is it ?
I decided to have everything suggested: tests, x-rays, scans, etc. The idea being that eventually, the consultants would realise that each symptom was not a separate condition and all issues were interconnected. This is not the way medical professionals operate however, and I was as glad to have other conditions crossed off the list at the time. It was after all my GP who had to decide what was relevant, what was a dead-end, what was clutching at straws, plain ridiculous ...or worth pursuing.
Perhaps worth trying another GP in the practice ? Someone who is more concerned with helping you move forward with this ?
Gobbozoid did you really believe in the b12 injections before? If you are very low in b12 it can have instant effects. It did with me. The mind is a great healer. I can understand your despair now it appears they are not working as before. What we concentrate or focus on everyday we get more of the same thing. I have been there. Start to retrain your mind to focus of the bits that don't hurt. I even added "thank you for my healing" when I was in my worse pain or fatigue. I also found that taking high dose potassium, magnesium and folate helped me a lot, they are also muscle relaxants.. I felt awful and so fatigued until I got these up. I also felt way better taking a B complex every day and extra thiamine B1 and riboflavin B2.
If you have pain all the time, I would start to look at if you have severe muscle tension and reflex in that area. You have now started to mentally guard that area. Muscle/memory. It caused me to have very tight restricted pelvic floor muscles, that would go into a painful spasm. Magnesium would help with this and some sort of natural muscle relaxant, to help you come off guard of that area. Acupuncture could help too.
It is almost like you have set yourself up for failure with it, and focusing on all the things you would want to do, but can't. This will cause you to feel depressed. I speak from experience with plenty of clients as I am a long term practising psychotherapist.
I'm so sorry you feel so low. I had the same pattern with my back pain and loading doses. After 6 my lower back pain - which I never associated with low B12 - had virtually vanished. Amazing, I thought! I'm healed! But no, it's been very up and down, and taken 6 months injecting every 2/3 days for me to begin to feel some improvement again.
I don't know if anyone can explain why this is - maybe the shock of such intensive treatment gives a temporary feeling of no pain, and real healing then takes time?
But having just had a UTI, bladder pain is the worst and I feel desperately sorry for what you're experiencing. Has your GP tested for more than just the usual e.coli ? Other bugs are available... I had an absolute bomb of an antibiotic here in France, 1 dose of soluble Monuril that stays in your bladder for 3 days and nukes anything and everything, gram pos and gram neg bacteria. Not often used in UK but it is prescribable. I've seen other folk have become B12 deficient post Covid, and of course nerves to the bladder can be affected by that lack, so I would be hopeful that healing is very possible. Any chance of seeing an actual urologist?
Well I’ve had this issue with the bladder for 4 years and only had 6 weeks relief in all that time. That was following the first loading dose my gp did.
In that time I paid a good few hundred pounds for a super duper urine test sure they’d find something. They tried 3 times to grow something and said my urine was super sterile.
I’ve been to urology several times and they’ve done tests and cameras and can’t find anything. Just the bladder is inflamed and trace blood. Had mris ultrasound everything.
I hope it is b12 related cos it’s early days yet. And if not it’s another problem on a list of problems.
I can’t even explain how sick and weak I feel, you’d think I had some terminal illness the way I feel. Like I am dying. But it’s the bladder that stresses me most of all.
Plus all my gp getting me tested for cancer again just added stress… I hope in a months time I will feel better. The private dr who put on this path said I should feel better in 3 months but it will take a year to be where I should be. My b12 was 130 at its lowest
Very tough. I know the first few weeks of injecting B12 is really hard physically and mentally. Often much worse before getting better. Sometimes it helped to step outside myself and look at mental and emotional symptoms subjectively, telling myself it was my B12, not actually ME having such extreme and negative thoughts. I did follow the advice from a lovely forum member to pick just a few symptoms and make a diary note of their intensity every day or so, and it has been a good way to see the sometimes tiny degrees of improvement. And try as best you can to take things a day at a time, you can't worry now about how you might be in a few weeks time as things will have changed by then. Wishing you well x
hi gobbozoid, it takes time to get better, trust the process and you’ll get there. Your body is telling you it needs rest so it can make healthy new blood cells. Up your protein and make sure your diet is good. If you’ve had antibiotics recently this will have affected your gut flora too. Are you on vitamin C? you mention you have a rheumatoid condition and are on Humira- did Dr K suggest you contact a dietitian/nutritional therapist? They would be able to give you advice to help your auto-immunity. Hope this is helpful 😊
Is that true if u don’t rest you can’t make the blood cells? I am constantly tired but life means I have to keep going. Like today I was making a disabled dog a ramp to get in and out of the house. But I was tired before and now i feel half dead.
I am so sorry to hear you are feeling so bad. It is a horrible frightening process.
Before EOD B12 injections I was coping, still like you felt like 85 years old, but I was coping. Once the EOD B12 started I stopped coping, body wracked with pain, crying, depression, insomnia, crushing and throbbing headaches - I felt absolute rubbish. I could no longer work, cook a meal, look after my family and animals. I called in every favour I could and we racked up an indebted tab like you’ve never seen.
BUT the light at the end of the tunnel appeared about three months later and symptoms started to subside.
Worrying about your partner’ op in August is futile and you know that, but what you can do together is plan and prepare for how you are going to support each other. You will be better then, but how much better is unknown so plan perhaps ready meals in the freezer - some good ones out there now, some treats too! Done books, music, outdoor time etc. Be realistic about cleaning and washing - it can wait.
I am sure you will get through this and you will both come out stronger. As Loupharm said “trust the process” - your body is working hard so listen to it and give it the rest and care it needs. Reawakening nerve cells is painful but absolutely necessary. Be brave and fill your head with positive thoughts - your inner voice is very powerful.
MarvelDC says they cut their doses of B12 from EOD, to less, do you think it would help. I am 5 weeks in and suffering lots of all over body pain and extreme fatigue, worse than I’ve ever had. Or do you think it would be better to continue with EOD protocol?
I don’t think there is an absolute right or wrong way to treat an extreme and prolonged B12 deficiency.
It’s a matter of trial and refinement. There is no doubt in my mind that reversing out, healing and recovery can be painful and exhausting.
Most important I think is to keep good records and to try things. Nothing is static. Healing and recovery is dynamic and you need to go at the pace that suits you and you can tolerate.
There have been times in my recovery when I have applied the brakes so to speak because I couldn’t cope with the effects of healing.
Take care and I hope you find your path to recovery.
I’m so sorry you’re going through this. It’s such a rubbish condition - who knew that a vitamin would be so important to life?? Certainly not me!
I don’t really have any answers for you but just know that we’re on this road too, some of us are further ahead and around the corner and others of us have only just stepped on and it’s early days like you. I think your initial response to the B12 shows that this will help.
Have you had any other blood tests to see if maybe you’re low in iron or folate?
Iron and folate were both good and I am taking supplements for it to. Next bloods will be after 3 months to check the levels. I think it’s the frequency of urination that’s getting me low, plus the fact there’s blood in it again and the dr keeps wanting to investigate for cancer, despite every test showing it isn’t as well as every scan etc is adding to the stress. Like most people’s gps they don’t believe that I need b12 etc despite the Cambridge blood clinic letter saying do.
have you done had iron panel done recently?? Sometimes ferritin can look fine, but the other iron panel markers can be to low since it can take months for iron to build new blood cells
No. All I know is my iron was reasonably high anyway and I’ve been taking iron tablets since starting b12. I tried a higher dose and it gave me nosebleeds and stomach issues so now on gentle iron
Gobbozoid why are you taking iron tablets if iron is reasonably high? You also need good copper levels for iron to be used properly instead of just getting stored and unbound. I was high stored iron. Not supplementing iron, just high anyway. Once I starting on copper I felt a lot better and it started to heal the peripheral neuropathy in my feet. I thought it was advised not to take iron unless you are very low. I could be wrong.
Well they advice that ferritin should be at least 100 for good health, and after you have your ferritin levels in a good place, it can then take around 4 months for your other iron markers to improve since the average life span of a red blood cell is 120 days, the other iron markers are iron serum, TIBC, UIBC and transferrin saturation, but the only way to check these is with an iron panel test…
Also from the sounds of it your taking non-heme iron, most people don’t absorb this type very well since it comes from plant food, heme iron comes from meat and is absorbed much better by the body, if you google it you’ll find alot of information on it, there’s a supplier called three arrows simply heme, they sell it at a good price, takes a while to arrive cause it comes from US, but worth it
Would I be able to tolerate it though? The guy who diagnosed me put me on gentle iron because all the other stuff made me so sick. He said if my iron had been low he would have given me a transfusion then and there but said it’s all good.
I’ve mentioned Three Arrows to you in the past because my husband takes it. I also described how other brands were a problem for his stomach and that Three Arrows has been fine, even on a higher dose As MarvelDC has implied, an iron panel test gives a more detailed picture. If you have one perhaps you could post it for comments. There are a couple of people over on the thyroid forum who are very knowledgable about iron and maybe here too on the PA forum. It’s a very complicated subject
Heme iron is absorbed differently so it doesn’t cause any side effects, it increases levels quicker and nothing blocks its absorption, I assumed it was Dr Klein who treated you…. If he said your levels were fine I’d trust his judgment, but personally I would still like to see my levels for myself.
I feel the same Gobboizoid - I wish I had never injected B12 as I also feel that I cannot cope. I can barely function at the moment and feel that I don't want to wake up in the morning. I am angry that Dr. Klein did not warn me about this.
Try reducing your injection frequency, some people can be quite sensitive to b12, a similar thing happened to me, the more I injected the worse I felt at times, so I reduced my injection to 1 every 10 days and felt better for it, your still healing, but with less b12 going into your body
Everyone is different, so we all absorb b12 differently….. personally I found I felt better injecting less, i now inject once every 10 days and feel better for it, my levels are still high and I'm still improving, but injecting less, you can only try… and if you feel worse go back to EOD.
I found out about 3 month ago that I had an iron deficiency aswell which I’m currently treating, so sometimes we’re quick to blame everything on B12 deficiency, when actually it can be other things aswell… alot of people who have low b12 also have low iron.
When I saw Dr Klein at thenend of May he gave me an iron infusion, so should be all set on that front. I am just telling myself it’s reversing out and all the extra pain and fatigue will pass I just have to be patient. It’s just so frustrating when you’ve been suffering for years and finally think you’ve found an answer and it gets worse!
Yeh I completely agree, it is very dis-heartening, cause in the mean time whilst we recover, we have no choice to carry on living life since no one understands unless you’ve been through it.
And it’s good you got an iron infusion, you just need to allow your body time to use the iron to build new blood, and the more deficient you were the long that will take, so your symptoms could be a mixture of things, what are your symptoms if you don’t mind me asking??
I have read that it can take 4 - 5 months to replace with new blood.
Lots of all over body pain, burning. And extreme fatigue. Plus loads of others, tinnitus, brain fog, temperature intolerance. I also have some spine problems which cause nerve pain in my hip/groin/leg and also spreads across my abdomen.
I think I am getting on top of the gastric problems after having probiotics, ACV, Symprove and eating good diet for a few months.
Yeh I’ve read that it can take 3 to 5 month depending how deficient you are….
And that’s interesting, all your symptoms is what I’ve had, some have improved and some still here…. Definitely takes time 😒
It’s a horrible thing to go through, if the NHS didn’t have b12 serum levels set so low, I would of been diagnosed in 2015, since my levels have been between 230 and 300 since then, but the doctors never bothered to tell me cause they was always in normal range, it was only when I looked into my own results, I realised they were far from optimal
My level dropped to 188 when I was finally diagnosed…. And yes, before and after starting treatment, I felt the need to wee all the time, even though hardly anything would come out…. This continued for a while, but after 6-7 months of injection it improved and stayed that way, coincidentally it also improved around the time I started taking iron, so that might of had something to do with it….
You’d be surprised how many people suffer with bladder issues, alot of the time people have that many symptoms that come and go, they forget to mention them all….. I still get fatigue, neeve pain in feet, legs and hips, disorientation, and tinnitus, so still healing
I can tolerate all the symptoms, except the urination as it stops me going out. Hope it does end soon. Can I ask did your bladder ache? Did it sometimes feel sore like when u sat or moved? Thanks
Yeh it would come and go, but I would get an uncountable achy sensation in my bladder, regardless if I needed a wee or not, around that time I also had bad stomach pains…. So I started probiotics from Holland and Barrett’s, and my gut health improved….. might be worth a try since bad bacteria can make its way to lots of different areas in the body which can cause inflammation and problems, just do a month of probiotics and drink good amounts of water improve any inflammation in the bladder
I am taking a probiotic. But just out of interest what one are you on brand and strength etc please? Yeah the full ache is so intense sometimes I almost feel sick.
Frequent urination with trace blood in urine. Extreme tiredness, emotional distress, depression, anxiety. Blurred vision that comes and goes in one eye. At my worst I even had phone vibration sensation in pelvis
Yeah I wrote to him yesterday and he said it sounds like reversing out you will get better, worse better etc and he told me in my case it will take a year. I hope each time it’s a little less worse…. He also said sorry
Dr. Klein has not offered me any advice other than he keeps saying B12 does not cause these effects... He said that no other patients of his have ever reported insomnia to him.
Gobbozoid, may I please ask whether you have reported your insomnia to Dr. Klein as it would be really helpful? He thinks it is a rare effect and said out of over 2000 patients none of his have reported this. It would be very beneficial to share this with him.
Have you ever had a sleep study? Asking because it would be good to cross things off. And although I am ignorant to whether sleep apnea can cause bladder pain, it 💯 causes frequent need to urinate.
And it also produces many symptoms throughout the body that are similar to b12 deficiency.
He told me a year too. He reckons a month of injections to heal for every year you have been suffering, 20 years for me, so long way to go. But he also said I might start to see some improvement after six weeks, and I’m into week six now. So fingers crossed.
I saw the same Dr K. We need to remember he is a clinician and that’s the area of his expertise.
I found the members on this forum to be the experts in recovery. I suffered dreadful reversing symptoms including chronic insomnia, excruciating pain and weeks of headaches but I didn’t report it to the clinicians as I understood it to be part of healing. I was reassured by the experiences shared in this forum.
I downsized my life to daily essential tasks - and that didn’t always include getting up or having a shower. I worked out the bare minimum I could get away with so my body could heal and rest. It was a horrible time and it lasted about three months before I started to regain my life. I know it’s a cliche “everyone is different” but what is not different is that healing and recovery is painful.
Small painful steps to better health - unfortunately in my experience, the only way out is through.
I don’t know that it does but some inject sc at 90deg into belly fat and I wonder would it make a difference. It’s certainly worth experimenting
My husband was also taught to sc into belly fat at a 45deg angle. Perhaps at 90, B12 is forced that little bit deeper, possibly facilitating quicker dispersal and uptake
I am on my 9th injection of EOD and had been on oral b12 for 6 months I did not even know about b12 deficiency before or PA. for the past 6 1/2 years had horrible symptoms stomach and body everywhere pain extreme weight loss Dr.s did not know why and specialist as well. I want to say that this forum was where I learned everything. and a few weeks ago I found out I have PA. now at least I have an answer as to why I was litterally dying. My stomach had all kinds of problems. well I thought oh I've been on oral liquid sublinguals for a while I should not have wakeup symptoms like I did before, well I did for the past 5 weeks I have been having them and this is my 6th week and things are starting to get better now. I still have the symptoms but they are getting weaker. I have to keep reading the post's of all of our support from everyone on this PA forum, and keep prayin g for patients. Our Lord has shown me all these beautiful people on here that truly care and know what we are going through. I'm in the US and it's amazing how many people help eachother all over the world on here. Everyone know's exactly how I felt and the same things I am going through so when they say hang in there it will get better they are right. things are changing for me now and they were in the past but we forget the little things we couldn't do back then and now can do. I have a lot to learn about PA still I am knew with this and I get scared of at times but with everyone and the answered prayers I now have hope.
Oh also I was at 86 pounds last month and now I'm at 98 as of yesterday, I can eat more varieties of food too. My blood pressure is still extremely low thought. yesterday it was 64 over 45. but I was actually able to be with my grandkids for about 4 hours yesterday and thats a new total miracle for me. today I have to take it easy but went to Mass and got through it and am praying for all of us in this Forum and giving thanks for everyone as well.
you were sent to the PA group that will help and guide you just like I was sent here too, to get help. I new nothing of B12 Def. or PA. Just don't give up. I remember just able to lay there in the bed and make it to the restroom and back and at the end of the rope, I had no other Dr.'s to go to or anything. I even retired and bought our plot at the cemetary and told my daughter when I'm no longer able to communicate to you I'm giving you all the paperwork for my 401K retirment and bank paperwork. I was getting even dementia and was actually dying. and years ago people actually did just die from it. but I was given more time now and getting better and stronger so don't give up.
Have you had tests for all the possible causes of blood in the urine? My suspicion is that you have something else wrong beside the B12 issue. mayoclinic.org/diseases-con...
You asked if you need to rest to heal and I think that the answer is YES. If I do too much I need to inject more often. I really feel it at 9 months in.Being outside is good for us, the greener the better, but try to not overdo it with the dog walking.
Don't go there, the cascade of pain you cause is unimaginable. This thing does weird stuff to your brain. Just observe your thoughts. Let them float by. My brain has been connecting memories in weird ways.
Are you getting vitamin D? Are you getting some magnesium? If you are going nuts, eat nuts!I find a spoon of hemp oil, just the salad sort, nothing psycho active, helps me sleep. Sleep, and lots of it, is necessary for healing. Lots of protein needed too when you are mending. Avoid sugar and booze.
If you're on antibiotics get some happy bacteria back in.
I assume they have tested your kidneys and their nephrons?
Stress really doesn't help you mend. It's horrid when everything is out of your control. So control what you can food and gentle exercise wise.
Just do the next thing, or watch a good movie. It will pass and you'll be a great wise advisor on here. Big hugs.
I am taking vitamin D spray. I’ve not had alcohol in nearly 6 weeks. I do feel I could sleep all day but sadly I can’t due to life. I pace a lot when stressed already done my 10k steps just pacing the garden.
I’d like to think my bladder just hurts as more nerves are coming alive. Indeed my frequency has dropped loads but the trace blood in urines still showing and they can’t find a cause for it so hoping it’s related to the b12.
I hope things are better today. I can see this trace blood is a big worry and it's not great when Doctors are clueless. Do you get swollen legs at all? Edema is a big red flag for kidney problems.
There are so many toxins in our environment to react to and the Covid is having all sorts of unknown consequences, especially for a reacting immune system.
Avoid pain killers if possible, as they can exacerbate anemia, as well as mess up your gut microbiome.
Aeroplane protocol, you have to look after yourself first, before you can deal with others. Take time out to heal. Ask for support. Book a holiday. Eat well. It's amazing how much meat, let alone lentils, we need just to hit recommend iron intake.
Just remind yourself that being up and down is just part of this . It's not you, it's a chemical imbalance.
Yeah I have to see my gp Thursday and know she will escalate things if blood is still present. Thing is yesterday morning I did the dipstick urine test and although it did show blood it was very little. But later that day we were taking an elderly dog who is struggling with mobility to the vets. When we arrived the road the vets were on was coned off with road blocked. So despite my not wanting to we had to all but carry this 6 stone dog. By the end of the day my bladder was aching more, I felt really tired and think I was peeing way more again. Wondering if straining to lift him isn’t helping.
I wasn’t aware that pain killers make Anaemia worse? Is that including ibuprofen?
Really struggling with motivation too, probably as I am worried about all this. Or worried when symptoms are bad that I’m not healing. I know others have had this bladder issue due to low b12 but it seems one of the rarer symptoms and it’s absolutely life wrecking.
Pain killers including ibuprofen lower hemoglobin. One thing my GP (grrr!) did flag up. No, don't go heaving the dog!
Do get some discreet sanitary pads, if necessary. It's worth knowing that every GP practice should have an incontinence nurse, who you could chat to. They'll have heard it all. We all hate the thought of these issues, but it's better to deal with them. There are plenty of disposable absorbency pads, sheets, and washable covers on the market. Boots do plenty. Sorry if Im going overboard, my late Mum went into total denial, and ruined the sofa, carpets, bed...! Hopefully for you it's just frequency. I think there are exercises you can do too.
Mum was initially diagnosed with dementia and it turned out to be B12 deficiency, but they caught it too late. She decided she was dying anyway and was refusing treatment. I knew nothing of it until far too late, because she wouldn't let Drs tell me what was wrong. All the while I was gently going down hill and getting very paranoid, not helped by her asking me to kill her on a regular basis. (Then at the height of the chaos, my boss committed suicide! Turned out he was a crack addict. ) So it just shows how it all messes with the brain cells. I'm just exhausted remembering all that.
So do check in with yourself about how logical your decision making is. I catch myself being a bit irrational at times.
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Reversing out or more needed? really need help !
Starting SSRI during reversing out?
Reversing out worse than actual symptoms
Risk of reversing out for A'levels
