Hello and please bare with me. About a month ago my new doctor ran my B12 levels 180 and negative on Intrinsic factor, so Pernicious Anemia. I just finished my 4th shot loader dosage last week. The day before that I had dizziness and this continues still to today. I also had sacrum and lower back pain and still do, this is normal and once in awhile it gets really bad like this week. So I went to an urgent care place affiliated with my Doctor's office. The Doctor there said "I can't really give you anything to make it better" and suggested I find some cognitive behavioral worksheets online to organize my thoughts on paper and this will help me control my heightened levels of epinephrine and cortisol and this is why I'm in so much pain. That I should start writing and use the other side of my brain and this will help control the pain. That I should "Just Do It" meaning life I guess. At this point I wanted to rip her head off of her shoulders, you know, Just Do It.
I am diagnosed with Sacroiliac Joint Dysfunction and there are a couple disc issues in my spine. Usually if I ice and rest the extreme pain will subside but it wasn't so that's how I ended up at the clinic today. I do have inflammation throughout my whole body even in my eyes causing vision issues blurriness and hard to focus especially when tired or at night. I told her about joining support groups and that I am usually very positive about my lot in life, I'm not usually depressed. I get bad when the pain doesn't ease up and when I go to useless doctors and get accused that it's all in my head. I thought the diagnosis of PA would be a direction I could pursue towards better health. I asked if she thought some of this was due to PA and stated many of my symptoms were what I have read about this disease. She said that this was all BS and again ignored my diagnosis. UGH so frustrating.
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alice215
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Hi alice215 according to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.
Click on the link, then on "Scenario: Management" and scroll down.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I am not a medically trained person so cannot comment on any of your other health "problems" but I've had P.A. for more than 45 years and I'm still "clivealive" at over 75.
the link says only for Great Britain, not allowing me to access.
I thought my nervous system might be reacting and that's why I had a bad bout of pain (excuse my computer, just started writing in italics and I can't figure out how to undo it) I have also been dizzy for the last week. That's why I even went to the clinic 6 days of pain and dizziness. I will ask my doc to check my folate levels. If he doesn't can I just take folic acid supplements anyway?
However, I think I know why you started writing in italics
Your second line started with the letter I - or upper shift i
You most probably hit the Control (Ctrl) key by mistake which turns anything typed subsequently into italics. To stop it simply use the control key and letter i again.
You can also use the control key and letters b and u to enhance text. Ctrl b for bold and Ctrl u for underline or all three together
To enhance parts of a sentence or paragraph already typed place the cursor at the beginning of the required enhancement, left click and drag the cursor, highlighting the required text, then using the Ctrl i, b or u singly one at a time or build two or all three together.
You won't need to cancel the enhancement by using Ctrl and the appropriate letter if it's in the middle of normal text - clicking the cursor elsewhere will remove the highlighting but leave the enhanced text.
Sadly none of this will help your dizziness but I see others more competent than I have responded with good advice about that.
I am having trouble reading this right now, lol brain disfunction, but thank you very much. I'm going to have my husband read this and explain it to me. Cheers from the USA.
I wish there was a 'smily' button as well as the 'like' button as I'd press it now Clive. So nice for a change to get a lesson on typing!! Not sure if you have an Apple or a PC laptop but I tried highlighting and pressing cmd and B on my MacBook Air and it worked a teat too, so thank you.
I'm on what used to be called an "IBM compatible" laptop with the traditional QWERTY keyboard which places the Control key where the Shift key would me on a typewriter.
My late wife Valerie, who was a touch typist, when first learning to use our home PC back in 1991was typing an article on the Apostle Paul and was inadvertently hitting the Ctrl key instead of upper shift for the capital P for Paul. Being a "typist" she never looked at the keys....
When it came to printing the article the printer would chatter along until it came to the name Paul and then stopped completely
I got a frantic 'phone call at work "I've broken the printer and the big letter P doesn't work on the keyboard".
I get home (ready for murder) and look at the "hidden commands" which had been embedded into the document and found that Ctrl P denoted "PAUSE PRINT" which meant there was absolutely nothing wrong with either the printer or the PC keyboard.
Sadly Valerie died 25 years ago but I still vividly remember her sigh of relief and her bright red face when she realised what she had done - and there was no murder committed that day.
Alice: I am spitting blood and nails in rage on your behalf. You poor, poor soul. Your doctor is useless and stealing a fat living. You will see elsewhere on this site a recent post that I made about my wife and the trouble we have had with the medical profession. What I was unable to put in that post (because it was already a very long post) was that my wife (among many other issues) suffered - and I really DO mean suffered - with back pain. This went on for months until I took the bull by the horns, got some injectable B12 and shot her full of B12 myself. Her back-pain started to ease after a couple of weeks and is now just an unpleasant memory. If I was in your shoes I would not hesitate. When decent quality medical care is not available to you, it is your human right to care for yourself. Syringes and B12 shots are very cheap, non-toxic and you cannot overdose. If I was you I would not hesitate. You have everything to gain and nothing to lose.
I think that's what scares me the most, wondering if I can reverse these effects. Already my vision has cleared a bit and the Tinnitus somewhat. The doctor has me on 1 shot a month, just finished 4 once a week. Where would I get this if not from a doctor prescription ? I've been looking on line for info about other varieties of B12 as my doctor has me on Cyanocobalamin and what I've read so far says that isn't as effective?
Cyanocobolamin is the cheapest and least effective form of cobolamin. It works but it has a short half-life (leaves the body quickly). The other useful forms are Hydroxocobolamin and Methylcobolamin. My wife takes Methylcoboamin - 1mg per month. If your vision is clearing and tinnitus is easing you may have caught it before the damage is permanent. If you decide to go down this route, Private Message me and I may be able to help you find a source.
There is fourth type: Anedosylcobolamin - but I do not (yet) know much about this form. Perhaps someone else on this site is familiar with it.
I was reading something in a Chronic Fatigue site last night about Anedosylcobolamin being the most accessible form for the body but I don't think they are available anywhere as injections. The only one I've seen other than Cyanoco is Hydroxo which I'm going to ask my doctor to consider. I get so angry at having to beg for help. For years I just stayed home and and shut up.
I have many more symptoms, I'd say about 80% of the lists. At one point I was diagnosed with HypoThyroid, took meds for a year and it calmed down. I have walking problems and overall intense body weakness. I had to quit working years ago. My memory is really bad, I can't think of words often and draw total blanks when talking. Kidney issues for awhile even septic at one point because another doctor didn't believe I was having pain in my kidney. Not until I was projectile vomiting black bile at 4 in the morning.
The PA diagnosis really makes sense with my medical history and also my mother's. She was diagnosed with Alzheimer's and she also had Thyroid issues and other things, very similar. And no history of Alzheimer's in our family.
In uk only Hydroxocobalamin is licensed for use however you can't purchase it here without prescription.
Hydroxocobalamin, I've been using for about 1 year and it's good.
If you google Versandapo.de (a German company).
I ordered 100 x 1ml Hydroxo ampules for about £56 (about $73 US dollars.
Cheap and fast delivery, well established company.
If you go to the bottom of the page you click on British flag to translate into English.
There's also an email for any enquiries (in English).
If you search B12 depot on their site you'll see the injections.
Rotoxmedica is the make.
(Just shared in case you want to purchase).
Personally I couldn't fight my GP so just inject once every 2 weeks. I injected 1 per week for about 4 months with good results for my neurological symptoms. Then I cut down to 1 every 2 weeks.
Recommend daily dosage for Folic Acid is 400ug 1 daily.
It's best to get it checked but people who inject B12 normally take Folate as it works together and 400ug is normally what GP gives you.
It also helps to have good levels of Vit D and Iron.
im not a medical professional, please seek advice from a professional.
I'm doing this tonight( looking up the company now) and have ordered the folic acid too. I already take D3 and a few other herbal supports like Lions Mane, C, Magnesium, and a Liver Cleanse too. Thank you again.
Johnathan, I can only take Cyanocobalamin as I'm allergic to Hydrox. I recently started self injecting once a week. I only got one trial run in my medical centre and last week I really, really hurt myself S. Injecting and am slow to give myself an injection this week. My whole body aches, I'm knocked out with sleep, pins and needles slowly coming back as are the headaches. I've lost my 'mo jo' about injecting again so am now scared as I really have no choice,........ Jill
No I can't take Hydrox it's been so long now that I can't remember exactly I just remember being sick for two months. I took another one as I thought I might just have a virus and was sick for another 2 months, I really only wanted to have an injection 4 times a year instead of one a month at the time. That was 25 years ago and my doctor won't let me try it again. It was only recently in March that I realised I was getting neurological symptoms for the first time apart from being exhausted all the time that is, and didn't know in March that it was because of my PA and my doctor didn't know either. I get headaches for several days before my injection (Cyanocobalamin) is due. I've been saying that to my doctor for years and I thought it just applied to me as she never commented or even suggested it was normal or a symptom of PA. Neither was my difficulty breathing or my continuous cough that drove everyone mad including myself for years. Since I came home in March and looked up the internet that I came on this site and have never looked back and now recognise why I have pins and needles, memory loss, palpitations, difficulty going up and later coming down stairs, weakness down my right side etc. I now self Inject every week at the moment and these symptoms are all gone and my memory is wonderful now. I can even remember names (for a while anyway)!!! Mind you the pins and needles comes back pretty quickly and difficulty breathing and tired but otherwise I see a great improvement. I do have asthma and COPD but I'm even wondering about these now too?
I really hurt myself injecting last week and was slow doing it tonight but my choices were 'slim' and 'nil ' if I didn't!! lol!
I'm so grateful to everyone here for caring so much and going to so much trouble to repeately reassure people that they are doing the right thing. I have learnt so much.
I know and appreciate that I got diagnosed very early at 42 and thankful that my doctor at the time recognised my tiredness and tested me for PA as others here are not so lucky.
Neither is my daughter so lucky living away from home and with bad fibromyalgia as her doctor refused to do a PA blood test for her. She is now 40 and my mother also had PA. My daughter trusts her doctor to know what's best for her so won't insist?
Benjie Sorry to hear about your problem. Can you find a nurse or friend to do the injection for you? Have you tried Methylcobolamin? It has much more persistence than Cyanocobolamin which is eliminated by the kidneys rather quickly. Another option is Methylcobolamin transdermal patches or sublingual lozenges.
Thank you for your reply. I HAD to take the bull by the horns tonight and self inject and did a better job tonight. I read here a few days ago that I needed to 'stab' myself like playing 'darts'!!! lol! so that's what I did tonight and it worked as far as putting the needle in but the B12 did sting? The energy of making an appointment here in Dingle at the moment was just too much as there is no parking to be got here at the moment with lots of tourists during high season.
I'm allergic to Hydrox (see Olly123 above) and it's the only one given at my medical centre so I have to get a special order of Cyanocobolamin and as I don't know anything about Methylcobolamin or Methylcobolamin transdermal patches or sublingual lozenges, nor does my doctor I really don't know where to start knowing what these do. I've only ever known injections for the last 25 years, but I've never had neurological symptoms till recently either. I suppose I've been lucky so far.
I AM learning here and am so shocked at how a lot of people are treated by their doctor for a B12 injection. You'd think we were all looking for morphine or something stronger than a vitamin?
I'm in the USA and moved recently to a rural area. Slim pickins for choices but I will travel. I'm about 1.5 hrs away from New York City and there is a train.
I'm starting 2 books now. I just came off a year of treatment for Lyme and it took years to find someone to treat that. I also have developed fatty tumors or cysts throughout my muscle tissue in my arms and thighs. I've gained a lot of weight in the past 10 yrs. so often I get the 'lose weight' speech like that is the problem and not a symptom.
I am also in the US and find that our dr have no knowledge or protocol on how much b12 to give patients with a B12 deficiency.
I am sourcing my B12 injections from a weight loss clinic. They commonly have two different kinds of injections. One is for weight loss and only has approximately 300 micrograms of B12 plus other items in the injection. The other injection, that some of them offer is a straight 1000 microgram B12 injection. I had nine of these weekly injections prior to stopping for 17 days so that I could get in a intrinsic factor antibodies test. The mayo clinic says a false positive can be given by this test if you had a B12 injection within the last 14 days of getting the test. Additional, This test can provide a false negative 40 to 60% of the time. My was negative but i will be getting retested.
I thought that after receiving 9 injections I would be able to start getting monthly injections as a maintenance dose, however after approximately two weeks some of my symptoms began returning so I have continued with the weekly injections. I am getting the cyno injections and my level was 814 after 9 injections plus over 130,000 micrograms of B12 tablets in under three months. So definitely still within range.
Since you are having issues with pain, you might consider having more frequent injections and as far as I can tell you are probably going to have to do that by going to two different facilities in an effort to get one injection weekly from one place and another injection weekly from another place. B12 is not known to be toxic.
I hope this gives you an option to check out and that you feel better soon.
how frustrating that we have to look for alternative sources. thank you for your input. My husband is reading one book while I read the other and even he sees a difference since I started taking the B12. I was supposed to go to monthly doses but I feel I need more at least at until my symptoms stop improving. All the best to you.
unfortunately many GPs and other medical professionals really don't have any awareness of B12,its effects and how it works but it does sound as if you have come across some particularly arrogant individuals.
Your symptoms do fit with B12 deficiency, but they also fit with a lot of other conditions and it is perfectly possible that more than one thing is actually going on.
Unfortunately it isn't uncommon for levels of pain to initially increase when you start treatment - my way of understanding it is that its like listening to an analogue radio when the signal is weak - you turn it right up so you can make something out above all the white noise and then the signal suddenly starts coming through strong and its deafening but it takes you a while to react and actually tune the radio back down again - so what that means is that your brain has got used to dealing with weak pain signals and suddenly things start coming through better and it takes a while to adjust.
Not sure about CBT for chronic pain - mindfulness meditation certainly works for some - just because it can enable you to separate yourself from the pain a bit - but that's not CBT.
Back pain can be caused by/have a number of contributory factors, including muscle weakness - like Johnathan 's wife I had a lot of problem with back pain - particularly lower back pain - which was caused by muscle weakness and started to go when I started to get the amounts of B12 that I needed.
I do have other health issues and use to work as a gardener for 20 yrs prior to my slow decline. Spinal fusion and Psoriatic Arthritis and the most pain I get is from the Sacral and pelvic issues. I was more pissed off at this doc , who I'd never met before and she completely thumbed her nose at any issues of PA and B12 deficiency. That if I had them I would be unable to use my body at all, Thank goodness I'm not there yet. When I spoke about this support group and the books I've started reading she stated doctor just write them to make money. People like that should not be doctors. No wonder she was working at urgent care.
The blood test for intrinsic factor is notoriously unreliable, people may get several negative results before getting a positive one. So I don't think your doctor is in a position to say categorically that you don't have PA.
Did you get a full blood test for ferritin, folate and VitD? All these need to be at a good level for the B12 you are getting to be used by your body.
It is also a good idea to take a good quality B complex multivitamin, to keep all your B vitamins in balance.
Sorry, I'm coping with a thick head myself due to a bad bout of sinus problems. That's why I didn't fully understand that this was a clinic doctor, not your regular one.
I will say that symptoms do often get worse before they start to improve. This happened to me and took some time before I really felt the benefit of the injections.
I'm sorry I sounded so short, I did not mean that. I just reread the thread and realized I was not making sense. I will make sure that all of these tests were taken too. That is what I thought was going on, that my nervous system was firing again and all I wanted was to confirm that my symptoms were safe. She looked at me as though I was wasting her time. Thanks for the info and support. I hope to express myself more clearly in the near future
No problem. We all understand that one of the side effects of low B12 can be organising our thoughts and trying to express them. Hope things will improve for you soon.
Thankfully my head is a bit clearer now as the sinus problem is getting better.
Have you had a full blood count FBC (known as Complete Blood Count CBC in USA)?
There can be useful clues on FBC/CBC as to whether a person might have a B12 deficiency, folate deficiency or iron deficiency. Sometimes deficiency in iron, folate or B12 can mask deficiency in one of the others.
Low iron can lead to small red blood cells (microcytosis). Low B12 or low folate can lead to enlarged red blood cells (macrocytosis). A person who has both low iron and low B12 and/or low folate may appear to have a normal MCV (mean corpuscular haemoglobin) on the FBC/CBC.
You mention back pain and dizziness. Do you ever have problems with balance?
Have you ever seen a neurologist? If you did, did he/she give you a romberg test or check for proprioception problems?
People with severe B12 deficiency can sometimes develop problems with their spinal cord. The PAS can tell you more about this and there is info in the B12 books I mentioned in my post above.
There is a PAS support group in St Louis, Missouri USA
I didn't reply because I'm going to have to have my husband help me with the answer but you did give me a lot to think of and I do appreciate that. I have had problems with balance in the past 4yrs and have fallen a few times out of nowhere. Currently I'm going on 12 days with balance issues. I have to really focus to walk in a straight line when I go into the garden I kinda walk like a drunken sailor. It seems to have eased up a bit but still there. I'm 54 and very weak, my husband carries my purse for me and at times I can't wear a heavy coat or use a heavy blanket, I think that is also my sacrum. But there are very rare days that I feel ok and can do some laundry and make meals for the week. then pass out in bed cause I've maxed out on energy. I couldn't go out too. Maybe good for one thing a day for a couple hours.
In regards to blood test I thought I had had complete blood test but when I touched base with my old Rheumatologist I asked if he tested my B12 and he had not. I don't think the doctors in North Carolina did either ( Neurosurgeon, Rheumatologist, Internist, etc.) I will definitely go over my old records and look for clues.
The Neurosurgeon did my spinal fusion I had horrid pain after the surgery, he was surprised. He put me on Neurontin/Gabapentin and I started losing speech and strength and ended up in a wheelchair for 5 months, turns out I was allergic to the drug. That was about 11 yrs ago or more. I had basically given up. I had tried so many directions to find some help and nothing until this new doctor, we just moved to a new area, gave me my Physical and said you have PA. So here I am.
Thanks for taking the time to write this I will make sure I check this all out.
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Confused and unwell
New to this
New to all of this Pernicious Anemia Confused about physical response?
Leaky gut, candida, and PA
Gp stopped my b12 injection and Iv had pernicious anemia 11 years , is this allowed apparently due to new research says my gp
