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Pernicious Anaemia Society
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Need some inspiration or just good stories

I’m waiting on my results for a blood test I just took to see if I have low b12. I guess I would just like to hear some hope of people this has affected long term and if they got better. I’m scared that I have let this go too long and thought I had other things wrong with me. I’m starting to have a lot of pain all throughout my body (burning pain) and my legs are getting worse. Can people give me some encouragement that if this is what I have, I may be able to at least get to a level of comfort? Thanks!

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I’ve had a really bad week and could really use some pep talk from people who have gone through this. To say I’m losing all hope is an understatement.

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Hey there, just to let you know that once you get on an even keel things will pick up for you, I'm not saying it's easy but certain medications can help with your problems, I'm in my mid fifties and had more than my share of health issues, and I'm lucky that our NHS saved my life on two occasions, the human body is pretty resilient and like with everything time is a healer, yep I suffer with neuropathy, a dodgy stomach, and a skin condition which requires regular surgery, of course I get fed up and trying to understand various conditions, but a trip to the doctors helps to sort out the problem, yes having constant pins and needles is depressing but I think trying to understand any illness is the hardest thing to understand, as normally folk can't see any physical symptoms and they won't understand your pains, lack of sleep can also add to your anxiety, and this can cause other problems, don't get bullied and don't get into long winded conversations that may get you stressed out, I'm an anxious person and I can't help how my body reacts to certain situations, so I tend to keep a quiet lifestyle and accept what I've got, and don't Google everything as this can set your mind running with worry, slowly but surely you can get on top of your ailments, it's not perfect, but nothing in life is perfect, we are just humans and we all need a little guidance from time to time, take things easy, and try not to worry, cheers.

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Thanks so much for your input.

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Sorry to read the above. I'm not sure much can be said without your results/ symptoms. Have a read through the forum of other peoples stories. I thought I was dying just before I was diagnosed. I didn't know what was wrong with me but I could hardly get any oxygen plus all the other horrible symptoms. I felt great a few months into the injections. Try not to worry too much. Good luck

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Did you have pain everywhere. I feel like my whole body is one big irritated nerve. It’s just gotten so bad over the last month. It’s like I just feel nerves when I sit down. I’m beyond frightened now.

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It was a long time ago but pain was usually chest area I thought I was having a heart attack. The thing is once we know what they are testing us for we start googling things then our mind starts to run away. I'm no expert and still learning myself as after having H Pylori again for so long its took me right back so I have a lot of the symptoms I first ever had plus new ones. Please try not to worry, once you have been diagnosed and get treatment you will feel a lot better. I do have the burning feet and tingling in hands and feet, sometimes muscle tremors tinnitus and many more. Dont Google too much and wait for results.

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Thanks so much.

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take a look at my profile - I had 40 years of depression that got a lot worse in the 15 years prior to getting my B12 levels right for me post loading shots. I also had a number of neurological problems etc.

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I actually have looked at your profile and that gives me hope that I might get better. Hope you are feeling well.

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few issues at the moment but certainly a lot better than I was 10 years ago

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I'm so sorry to burst you're bubble like you my b12 was very low 48 thought I was just getting old I have now given my job up after 30 years im still not 46 till July I have got worse legs nausea all the time fatigue I'm under a speclist but still waiting for answers x

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I’m sorry to hear about all your symptoms. How long have you been having the symptoms for? My legs are getting worse by the day - they were tolerable up until about a month or so ago. Thought I had fibromyalgia or CFS or just getting old.

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Hello melblue I've had the symptoms for 2 years getting worse now I have just been diganoized with ME and small nerve fibre damage but specilist dosnt think it was caused by b12 I'm just waiting for results

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Hi guys it's sounds like it cud be ur b12 I have this and going through the menopause to it's vile yes u feel very low in self and exremly lonely although u gave it family around that love u u still feel like it it's a horrible thing to have i have injections every mo th for mine helps for a few weeks then boom bk to the same feeling again I get very very tired to all the time it like living in a different world gud luck with ur results xx

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Thanks for you input. Hope you are feeling better.

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Sorry to hear how low you are feeling, when all my symptoms really kicked off 6 years ago I was in a lot of pain and doctors decided to go on a cancer hunt. They were right I had the markers and I was losing weight rapidly but sadly my nerves were so bad they sent me to the brink of a nervous breakdown. The depression that followed was awful. Fast forward 6 years and one good gastroenterologist later, I'm now self injecting under my doctors supervision, depression free and for the most part pain free. Life has its ups and downs, I've had to give up my job but I'm training to do some thing I'm more interested in. Gastric issues are dire but even here I've adapted, friends get used to me bringing a tupperware 😊. I can't drink alcohol but we go to concerts, theatre etc. I try to be as sociable as possible, I invite friends around etc. I agree with others here, Don't Google, that's the worst thing you can do, I have never successfully diagnosed anything on Google, just frightened the life in myself! Accepting this situation is difficult but if you can get to that point things will fall into place from there. I've recently taken up meditation (and I'm not a tree hugger) it's helping me immensely, the only stuff I Google are genuine medical studies (pubmed etc). Take heart, this is a bad passage but you will come out the other side. Plenty of people here did.

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Thanks for the information. Were you having bad muscle pain in your legs as well?

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Yes and I still am although less than before

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Did the muscles start to feel weak? Did you have permanent nerve damage?

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At its worst the pain was debilitating and here's the thing : I saw several neurologists at that time and they foung Nothing!, big fat zero. I smelt odours that were not there, I was zapped awake by a type of electrical charge every time I tried to sleep, pins and needles in my arms etc etc. A few years later and the P A was diagnosed, atrophic gastritis, positive antibodies, everything except exceptionally low B12 so no supplementation offered initially. By the time I got the B12 the depression had taken hold. All this to say the tests are not infallible and as the research shows symptoms predate changes in blood values by years sometimes. Frustrating when you need a diagnosis, this is why so many of us here have spent years meeting skeptical doctors. Take heart my legs are much better now, the problem comes back but it's bearable. I even have days when my legs feel normal again.

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Did your legs ever get to a point where the muscles started to feel weakened, or did you begin to have trouble walking? When you sat down, did it feel like you were sitting on a pin cushion sometimes? Sorry for all the questions, just trying to see if others experienced what I’m experiencing.

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I didn't have the pin cushion sensation, but my legs were very weak, so much so I had to wear elastic bandages around my knees to give myself some support. At the beginning walking was difficult

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Did you have injections and did you also supplement with those?

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Yes monthly, I now supplement twice weekly

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I disagree about Googling though, because I wouldn’t have found this information or this group if I didn’t Google.

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I Google the Shit out of anything to do with my health because I have had a lifetime of being dismissed when I have had serious medical problems. I have kicked the pedestals. Medically trained people know a lot but they don't know everything - there are gapping holes in what they know. I have seen them make so many mistakes, not just with me but with other people I know. If you are an ordinary straight forward person with an ordinary straight forward problem you might get by uninformed, but I go by 'what you don't know can harm you' - because it has. Are the tests you are waiting for definitive? Or the first round? How much longer do you have to wait? If there are other tests you may have to do before changing your B12 levels, are there other supplements you can take to possibly ease some of your symptoms? Even something like Magnesium may help a bit. Have a look......

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I just got results and it says I have b12 of 560 - not even close to deficient. It sure seems like this is my problem. I’m wondering if I need to do that MMA test instead.

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Yes, do the other tests as they give more reliable results. The literature says you can significant neurological damage while blood serum tests look normal.

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It seems unlikely, though, doesn’t it that with a level of 560 to be deficient? That’s quite a bit above even moderately deficient

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It took about 5 years for my diagnosis of PA. It wasn’t until the past 7 months that the neurological symptoms came on. Prior to that it was just fatigue and low energy. I had a lot of symptoms. My first Hematologist actually told me that there was no way they (symptoms) were all related to PA because I wasn’t anemic. Needless to say, I got a new Hematologist. Which in the US I guess is a lot easier. This all took place this February. I am feeling much better now. I think the worst symptoms for me was the dizziness, tachycardia, fatigue, and insomnia. I am still having dizziness here and there, but nothing like before. I also have the insomnia now and again. Again I had a lot more symptoms, but they have greatly improved. It will get better.

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Thanks. Sounds like you are on the mend which is great.

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Meblue - Firstly, I'm guessing that a lot of the best "success stories" are people who no longer need or use this forum, but DON'T STOP READING YET !

Secondly, to my mind, some of the worst symptoms can be anxiety, mood swings including very low moments, and these feed into the fact that this is already quite a scarey thing to have happen to you.

Thirdly, most of the people here are still working on improvements and not yet able to give you their "happy ending" story just yet !

Fourth: You are right at the beginning part, where you haven't had anything confirmed, but know how you feel. Who wouldn't be anxious and down ?

Most importantly, you are probably not feeling well enough to do much right now, but if you can, list down all your symptoms, then record daily their severity and frequency. If not, get someone close to help you. Leave a few columns blank- not for in case you get more, but because most people have experienced problems that they did not relate to their condition until they improved after treatment! (If I'm starting to sound a bit like a teacher: sorry it's in my blood !)

The reasons for this are many: can help GPs/ consultants, can help you see where treatment is effective and for how long, can help others understand how far-reaching this condition (if it turns out that you have it) can be, but best of all, it will let you see when a symptom is improving - or disappearing altogether ! Some are more stubborn that others, and we are all different. It will also help you answer the most random of consultant's questions (it helped me in consultations because my memory is so awful). "When did you start..." , "How often do you....", and my favourite "Of 10, with zero being "no pain at all" and ten "unbearable bloody agony", what number would you give ...…?"

Finally, here is your happy ending story:

I stopped work because I was in such pain that I could not even stand up straight at the bus stop any more and had to hold onto the post- and this was on the way to work! By the time I actually got to work, I felt like crying from exhaustion. I had rows with people- on public transport, in shops, in the streets, at work, and I couldn't always understand what was being asked of me or shown to me. By the time I got home, I did not want to talk to anyone and would ignore my phone. Mostly I just slept. I went off sick for 15 months. I saw a lot of consultants and had a lot of tests, a lot of worrying things were ruled out.

I was diagnosed with B12 deficiency (without a clue what that meant or why it happened), and later with Functional B12 deficiency, as my blood was by then swimming in B12 but my symptoms were all getting worse and my MMA levels were raised. That was me then.

Now I'm back to work 2 days a week, am starting to look forward and plan things, am interested in my world again, and am still improving. I am hopeful. It's possible.

It took me a long time. I was honest with everyone when I started self-injecting: friends, family, work, nurses, GP, consultants.

when you read other stories here remember that we are all different and at different stages so please don't get disheartened. Look for someone similar to you with similar symptoms and find out how they best manage their condition.

Ask for printouts of your blood tests: there are people on here who can help explain what they mean. Scan them in but mask out any personal details: yours or your GPs etc. Sometimes "within range" is likely to mean no action is taken, when there may be something at the very low or high ends of the range that indicate a potential condition, supplements might be needed or at least something worth keeping an eye on. Not always picked up by a busy surgery.

Trust your GP to help you and if he/she needs to make referrals, you can ask on here what is the best way forward once you have had some results. Very best of luck.

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Thanks for your story - it’s encouraging. Can you explain your pain? My legs went from having tight muscles that would feel better whenever I walked around. When I would sit, they just felt strange like restless leg syndrome. I’ve been walking 4 miles a day for a couple years and it has been like this. They have gradually been getting tighter and now they are starting to feel like lots of nerve pain - feeling like the muscles are deteriorating or something. I’m staring to feel this in all my muscles too. I have no other symptoms of PA - no tiredness, shortness of breath, mental issues (except for depression which is obvious), no problems with tinnitus or remembering things, no balance issues. Basically, it just feels like my muscles are all overstretching when I move, lots of pins and needles now in my muscles. It is the most hard to describe thing in the world. I’ve been written off as depresssed in the beginning and given antidepressants which it why I’ve just been trying to live with whatever this is. I can no longer accept that because these symptoms are such that I’m pretty sure if I don’t find out something, I’m going to be in a wheelchair or dead. Nobody has believed me that I have physical problems and I’ve been so depressed that I can barely eat anymore so I’m sure I’m deficient in a whole host of things.

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Also, when you say you were in pain, what type of pain and where? Was it painful in your legs to stand or sit? Were they weak? Did injections help with pain?

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I'm reading some of your replies, and perhaps you are looking for more detailed information, especially in the leg area, well I have constant pins and needles, and the muscles are constantly twitching, along with 'burning' sensation, the problem with this condition is that it has so many sly tricks and everyday can bring on different sensations, and the list everyone describes may not cover your symptoms, but I understand your concerns it's good that you are trying exercise, but I feel physically tired already with this condition and as I used to be a bit of a fitness freak I find the thought of doing anything causes bouts of depression, it all depends how old you are and also I'm a believer that if you've had a physically demanding job time catches up with you, now it's not all doom and gloom, you can get lidocaine patches which can 'numb' the pain, and even though I take a antidepressants tablet a night time it aids sleeping, just because your doctor may give you a antidepressant it works deferently on your body, sometimes it's classed as an anti epileptic drug, but trust me it works! Avoid alcohol and smoking as this can cause more nerve damage, I'm quite happy to be teatotal, so I don't miss drinking, have plenty of goals in life, and eat a healthy diet, you will overcome these problems, I didn't want you to get a false impression, yes it's painful and be prepared for the long haul, I'm into my seventh year with these symptoms, but I refuse to be bogged down, stay strong, and there are plenty of folks who will give you plenty of advice, if you are unsure of anything else well I'll keep an eye open on any more of your questions, like I said we all have different pain thresholds, and you may have to try certain medications before you start to feel a little more comfortable, this can be a long process, but it's trial and error and with the right support you'll find this condition is bearable, good luck for now.

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Thanks. Yes my leg questions are mostly because that is mostly my problem. I don’t seem to have heart palpitation, fatigue issues or any of the other thing. Maybe that’s coming, but I thought it was the other way around. Do you use supplements, or are you just on injections once a month?

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I found it difficult standing, I just wanted to sit down all the time. I can stand longer now after only a few injections. If the symptoms you are getting are only in your legs it may turn out you have a different problem. One thing that may be worth getting are some scans of your spine.

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I guess that’s a possibility

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Pain was L/H groin pain and hip clicking, but also weakness in legs, heavy bone-on-bone discomfort from knees at night, shin pain often, loss of muscle generally -mostly legs and arms, fine walking usually in preference to standing still or sitting in a hard chair, unless really tired and then walking needed a lot of effort, like a big rubber band around thighs. Very burning feet.

These symptoms have all gone except muscles still weaker than before.

Most difficult is anything requiring bending forward from waist: cleaning bath, hoovering etc..... not trying to get out of housework ! This could be from the lumbar wear and tear to lower vertebrae and discs not the osteoporosisof the spine which is supposed to be painless and is anyway improving now.

As I remember it, standing was always the worst thing- used to make my legs shake.

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I started on a course of what they call loading doses, one every other week for five weeks, and then it was dropped down to one injection every three months, now if you are getting them every month you are fortunate I think, my symptoms are definitely getting worse, but trying to get my doctor to increase my injections more often, is like getting blood out of a stone, I'm also taking folic acid 5 mg tablets daily, symptoms do creep up, so keep an eye out for anything else, also I've had numerous stomach problems and even taking an antacid tablet daily can cause more b12 issues, it's a nightmare trying to get on top of it and don't get fobbed off at the doctor.

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Hi Meblue

I am, like you, in the early days of consultation. I was diagnosed with b12 deficiency, low ferritin and folate in January. I had a week of loading injections and saw little improvement in symptoms, in fact I felt worse for a couple of weeks. Since then I have improved and relapsed but Doc thinks B12 is not issue and wants to diagnose ME. I am resisting and have been self injecting B12 and supplementing with magnesium, folate, iron and getting familiar with pre and probiotics for gut health with varied results. Pain has improved a lot but not gone entirely. I have good days with no fatigue but get it back if I do much beyond the very basics. I mowed the lawn last week and vomited in the bushes and passed out with exhaustion! But at least I felt like doing it. I think at this stage I would recommend acceptance that it will take time and patience to get back to normal but I live in hope that I will get there.

I have lost my job on the back of it and will need to sell my home but I am determined to see the light at the end of this tunnel. I share your fears and frustrations but I guess we are not alone!

Best of luck to you.

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Thanks for your response. Sorry to hear about your issues. Hope they get solved

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From what I’ve read on here, it can take years to see improvement with this stuff so if your doctor thinks it’s not B12 because your symptoms haven’t gone away right away, maybe you just need more time to improve (but you probably already know that too).

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First of all I just want to say how sorry I am for the pain you are experiencing. If I were there I would give you hug. What you are going through is hard. First step is to except that fact.

I find when I can keep my stomach healthy ( I have chronic gastritis caused by PA ) I feel over all better ; emotionally and physically. This has taken dedication to eating for gut health. Bone broth, no dairy, soy, gluten also good probiotics are key. It is hard to do when you are not feeling well. But it does help the body heal. I am 52 was diagnosed 2 years ago. I have to be careful not to overextend myself. Not do do much in one day. I had a 2 day work convention this week that totally wiped me out and I am in pain today. But on average I do pretty good most days. Not anything like my old healthy self but still a good life that I am thankful for. I try to relax more, fun more, and this one is hard for me but so important to add laughter and joy as much as you can under the health circumstances. Please know you are not alone on this journey. Yes there is hope. Progress is slow. But there can be progress with a few life adjustments. Best of luck to you.

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Forgot to say, Meblue , and it may be of no relevance to you, but I remembered clearly this morning why my legs used to shake if I stood still for too long: standing up straight felt exactly like I was leaning slightly backwards, so front thigh muscle always in tension ..... could be just me, how do we ever know unless we say it ?

Any of this sound familiar at all ?

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