This sounds strange, considering I have been diagnosed with pernicious anaemia for three years - but I have multiple auto immune diseases, and I find it so hard to differentiate my symptoms. I think lots overlap?
I self inject B12 every three months - I have to do it subcutaneously as I am not to have intra muscular injections do to being on anticoagulant therapy (Hughes Syndrome.) I also have Multiple Sclerosis and Lupus symptoms. I also had a stroke. So you can see why I find it difficult sometimes to know what is causing what problem. I'm quite good at recognising MS things, because that is my primary diagnosis, and everything else came all at once.
After my first B12 I literally felt that I had been given a kiss of life, and then again when I had been feeling very poorly, and realised I had not had an injection for four months.
I'd like to know if there is anything specific I should be aware of relating to PA?
Thanks for your help!
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anniesensi
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both have comprehensive lists of possible symptoms.
Perhaps you could print them out and also for your other medical problems. If you have them all there infront of you it is easier to see and cross reference, rather than having to keep dipping in and out of various websites, and you could possibly see where there are overlap symptoms.
I'm so sorry you've had to go through so much Annie and it's marvellous that you've stayed so positive.
Many researchers believe 'leaky gut' is the ground zero of autoimmune disease, eventually causing the little brushes/microvilli in the stomach to flatten and become unable to absorb B12 and other essential nutrients. B12 though is one of the more difficult vitamins to absorb.
Below are links you may not have seen. In the film below, Sally Pacholok mentions PEs as a symptom of B12 deficiency. She also says B12 def. can lead to high homocysteine and, therefore, a higher risk of stroke.
Personally, I would try more frequent B12 injections, as well as supplementing with sublingual B12 lozenges or sprays - Sally Pacholok recommends covering all bases and you cannot overdose.
WOW - You know, I had a stroke aged 34, which was mis diagnosed as MS relapse by the hospital. (They did the wrong type of scan and so did not detect the blood clot in my brain.) Prior to the stroke I been told I had progressed to secondary progressive MS, so I didn't question the mis diagnosis, and when on the day of the stroke I became a wheelchair user I believed that it was due to a massive MS relapse.
Four years went by, full time wheelchair user and then I had a clot in the artery of my leg which was fortunately saved by surgery. Then I had bi -lateral pulmonary emboli and so was diagnosed with Hughes Syndrome and the stroke was discovered. Not long after that I was also diagnosed with Lupus 'like' syndrome and pernicious anaemia, folate deficiency and vitamin D deficiency.
I have been having 3 monthly B12 since then, and have begun walking on crutches over the last two years. I wonder if the B12 is partly responsible for being able to get out of my wheelchair?
I would think so I know of someone who had to retire early after a MS diagnosis and came here in a wheelchair. Greek Docs soon discovered it was her thyroid - and she is now a very active picture of health. She is on the Thyroid Forum here on HU.
If you scroll down to the neurological signs and symptoms you will see that B12 Deficiency is a neurological condition. Check out the videos under the heading Films. There is one of a Consultant Doc who was so very ill with an unknown neuro-degenerative illness which turned out to be B12 Deficiency. There are brain changes with LOW B12 similar to MS and of course B12 is involved in the myelin sheath. I live with that problem after surgery removed the Terminal Ileum at 27 - the part of the gut where B12 is metabolised back into the blood stream.
I do know that my MS diagnosis is definite, I've had second and third opinions. I was diagnosed very easily as lesions were visible in both the brain and spinal cord. I also - more importantly had a lumbar puncture which seems to be the definitive diagnosis.
My diagnosis of MS was eight or nine years before my diagnosis of PA. I had lots of blood tests at that time too, so I would have thought they'd have picked it up then?
Maybe though, the results can be explained by PA? I don't know - is it possible I don't have MS? As I've been typing this I've googled lumbar puncture for MS - it implies that it isn't the definitive diagnosis I was told it was. I tested positive - but maybe it was just waste myelin from another cause?… my brain MRI's and spinal MRI's showed active inflammation on various sites in both brain and spinal cord - could this happen with anything other than MS? Residual scarring can still be seen, and have grown in number. I was told that the lesions are typical of MS lesions…
If I ask my Neurologist this I'm sure she will ask me how my psychotherapy is going! (PTSD to add to the mix)...
I think you need to keep persuing the other aspects of your health - like the PA - low VitD - and possibly thyroid. ( Thyroid often ends up on the low end due to low B12 - Ferritin - Folate - VitD - chicken or egg ? ) As you know from reading my profile I have had a complicated medical journey and have improved since reading and learning for myself.
Brain inflammation can happen with Hashimotos - also from gluten. As you have said it is a minefield. I have read the book - Why Isn't My Brain Working - by Dr Datis Kharrazian. He talks about gluten causing inflammation in the brain - so I have been GF for over 3 years now in an attempt to reduce the Thyroid anti-bodies
We are two hours ahead here in Crete so am off to sleep and will leave you in peace. Wishing you well and hopefully finding some answers to lots of questions.
I've just read a book by Anthony William, The Medical Medium, and he (and others) reckons that autoimmune disease is caused by the Epstein Barr Virus. His book is amazing and gives dietary and supplement advice which I can tell is working.
I did feel a bit down after fbirder's response and strangely (and amusingly) I was thinking of using the same quote that you did!
The book is amazing. There are several areas that he covers that I've researched well and his information is spot on. He described almost everything that has happened to me symptom wise, including taking B12 (methylcobalamin and adenosylcobalamin) as part of the cure (which it has been) so I'm just blown away by it and feel a great desire to tell everyone hoping it can help them too.
Hi anniesensi are you in the UK as I'm at a loss to understand why, given that you were diagnosed with P.A. 3 years ago, you are self injecting as and when you remember. Surely you should be getting your injections via your surgery.
I'm not a medically qualified person but I think lupus can affect your B12 levels and B12 deficiency can sometimes be misdiagnosed as M.S.
You say "After my first B12 I literally felt that I had been given a kiss of life..." B12 is not toxic and if you feel the benefit so much after injecting there is no reason why you can't shorten the interval between each shot until your symptoms subside or even disappear. The healing process takes a long time to repair the damage caused before the diagnosis.
As to P.A. symptoms, many are mirrored by other causes but here is a list:
1 Pernicious Anaemia - Symptoms
1.1 General Symptoms
The following general symptoms are common in those with PA:
The Strange Tiredness
Fog days, where you have difficulty in thinking clearly
'as and when' gosh I wish my gp would read that! I was desperate to have an early b12 injection before my holiday -no dice - so I had one privately and now being 'punished' by a refusal to give me my four-weekly b12 injection.
"as and when" in anniesensi 's case was not a good thing as she was forgetting to inject but I see what you mean relating to our doctor's "one size fits all" attitude...
No, that was bad - I'll never forget again, after four months I felt like death. I get the hydroxycoblamin by repeat prescription every three months now. I have asked for it to be every two months, but my GP practice don't want that. I should ask my haematologist who diagnosed me.
anniesensi According to the N.I.C.E. guidelines for doctors who should ask:-
Treatment for B12 deficiency
How should I treat a person with vitamin B12 deficiency anaemia?
For people with neurological involvement:
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
If you are still manifesting neurological symptoms after injections and before the next one is due I think the 2 months guideline should apply.
I am not a medically qualified person but someone with P.A. for 45 years and if you would like to read my P.A. Story click on my name (above). I'm still trying to get my intervals between jabs reduced.
Got to show this my Husband Clive .. So many things ring true! What a Cruel Illness and how the doctors can change a lot of these things into many other illnesses. (I know as I have had this for many years!) Thankfully got a great husband who is glad I have found an answer and he is injecting me most nights! After 6 weeks I am finding my spirit is lifting and I am slowly able to do more! Hope you well tonight .. xx
Be assured Catsgalour there is life after P.A. as I've had it for (officially) over 44 years this month and I'm still "clivealive" coming up to 75 next month.
When first diagnosed I'd probably been suffering from depleted B12 levels since having had a partial gastrectomy at the age of seventeen 13 years previously in 1959. By 1972 I was a "walking Zombie" with a wife and two daughters under five, my brain not knowing where my feet were.
At first I was threatened with having to eat raw liver three times a day or having four weekly injections of cyanocobalamin for the rest of my life. I chose to have the injections and they seem to be working although I often "feel the need" in the run up to the next one.
By eventual reluctant agreement from my previous GP I "won" the concession to have an "occasional three week" injection and I' now in the process of trying to persuade my current doctor to make it a regular three weekly regime. If I'm successful it establishes a precedent which will help the next patient along who "feels the need"
This is a war and if every contributor on here can persuade their own doctor to acknowledge that patients with B12D or P.A. need to be listened to and their symptoms treated regardless of what the test results show then that is a battle won.
I glad to read that you are noticing an improvement in your own symptoms and wish you well for the future. Make sure you eat your "greens" to keep your Folate (B9) level high or take a folic acid supplement as this works with the B12.
An interesting point there Clive, regarding eating your greens - which I do every day, but I must be careful not to over indulge in green veg, or anything containing vitamin K as it counteracts the anticoagulants I take and could lead to a blood clot!
anniesensi I meant that you need to keep your Folate at a reasonable level for it to work with the B12. It's good that you are aware of your own "limitations" where it is concerned with your other medications.
Same here and have done for years. Folic acid is also to be found in some breakfast cereals and there's talk of it also being added to bread as they do in the USA.
Well, I can definitely tick a lot of those boxes, however as you say symptoms overlap. My MS was diagnosed in 2004 with MRI and lumbar puncture, so it's a definite diagnosis. I self inject because I can only have the B12 subcutaneously as I am on anticoagulant therapy. I prefer to do it myself, and I just make a note of when it is due. I have to self inject other drugs so for me it's easier than going to the surgery.
Perhaps anniesensi you might like to read a book called "Could it be B12? - An Epidemic of Misdiagnosis" by Sally M. Pacholok, R.N., B.S.N. & Jeffrey J. Stuart, D.O."
Chapter 3 is headed "Deadly Mimic: When B12 Deficiency Masquerades as Multiple Sclerosis or Other Neurological Disorders" is far too long at over 20 pages to produce here and most of it beyond my level of understanding but it does clearly indicate that the two are interlinked in many ways.
The whole book is well worth the read as too is Martyn Hooper's "What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency" both of which can be got from Amazon within a couple of days.
I lived for nearly 40 years in ignorance of what P.A. was all about simply "turning up" every four weeks for my injections, never being questioned as to how I was feeling by either nurses or doctors and not knowing anyone else who had it. Down through the years I noticed the return of some symptoms (pins & needles, tinnitus, breathlessness, etc.) and used to "slip in" the occasional three week appointment with the receptionist who never queried it. One day I made the mistake of saying to the nurse "see you in three weeks" and she said she would report me to the doctor and refused to give me the injection. The doctor called me in, looked at his little book and said "it says here every four weeks so every four weeks it must be". He smiled and said it couldn't be the P.A. as I was getting the B12...
Desperate and infuriated I joined the Pernicious Anaemia Society (£20.00 - like P.A. for life) and "discovered" that there were hundred like "me" who struggle between jabs. What I learned from others experience resolved me to go back and challenge the doctor who (reluctantly) "allowed" me to have the occasional three week one and changed the prescription to read "use as directed".
I'm currently trying to persuade my "new" doctor to regularise" my regime to "every three weeks". Before she is willing to do that she wants to eliminate what other things might be the cause of my "coincidental" returns of symptoms having picked up low Vit D 3 months ago and the fact that I'm also Type 2 diabetic (fortunately well under control). I have another appointment on 20th June to review my Vit D "improvement" and hopefully get a favourable decision on my jab frequency.
This is a battle of trying to "educate" my doctor to treat my symptoms not just the test results and hopefully this will help the next P.A./B12D patient along. If we all succeed in our own battle then eventually the war will be won.
With regard to your injections in Martyn Hooper's book it states "intramuscular injections are retained for longer than the much less painful and easily administered subcutaneous injections" which would point toward you needing more frequent shot of B12.
That's all very interesting. I was diagnosed at St Thomas' hospital, so I can't believe how little anybody has ever worried about this diagnosis.
I'll definitely take a look at the Martyn Hooper book, and maybe highlight parts to show my Dr. The difficulty I foresee is that because I am under consultant care for everything my Gp is reluctant (understandably) to interfere with my prescriptions. I can imagine that my consultants might be stubborn. I will ask them them 'humour' me and let me try more frequent B12.
So many things seem connected - I have Hashimotos - Crohns - and B12 issues which took many years before I was able to begin to piece the pieces of the complicated jigsaw ....
I would certainly inject more than 3-monthly I have weekly injections - to help with nerve issues.
I think Adcal also contains calcium and a low level of VitD - I think one tablet contains around 800 IU's of VitD. ( I only know this from the Thyroid Forum ) Better to take just good levels of VitD on its own and also take VitK2 - which directs calcium away from your arteries and into the bones. I see you mention K's above - but that is K1 and not K2 that is involved in the clotting mechanism.
Lots of information in the above website about everything to do with D - but also a chart to show levels and how to dose accordingly.
I self treat with B12 as I can buy it over the counter here in Crete - 3 phials of Hydroxocobalamin and syringes is under 5 euro. No prescription required - same with my thyroid meds. So cannot understand why the NHS is so reluctant to prescribe and treat.
So have you had your thyroid tested ? Best to leave no stone unturned. When the Active thyroid hormone FT3 is LOW ( rarely tested on the NHS ) then things do begin to go wrong - and low B12 and D are but a few. T3 is needed in every cell of the body - so that's an awful lot of T3 - so when low there is not enough to go around and things begin to go wrong.
You can click onto my name to read my Profile to see my journey to wellness - things are much better now I have taken control of my health.
Thank you for this. I have had my thyroid checked, I have no idea if they checked for active thyroid hormone - I just know I had my thyroid checked a couple of times. It's a minefield!
My fingernails developed pronounced ridges and would peel in layers like the Mica (a mineral rock) Also, the half moons disappeared from my nailbed. I have been injectiing weekly (as I'm supposed to but sometimes skip weeks) for the past 7 weeks and have noticed significant changes in my nails. Ridges have nearly disappeared, nails are stonger and moons are reappearing. Hope this helps.
I have this! I have ridged fingernails that delaminate and no half moons. I had no idea that this could be PA - I thought it was just my nails as I'm getting older - or due to the medications I take!
A lot of symptoms are related to movement of food and bile in the gut. You may eat something and have no symptoms immediately. Then three hours later you have wind. Maybe six hours later you get real sleepy. Then have a soft stool or diarrhea. 24 hours after eating, drinking or taking meds you may get brain fog. Each symptom and sequence is unique to an individual.
If you are on B12 injections. You sometimes feel like you are on a roller coaster. You free great, then headache. Or some pain. Then as the B12 depletes again, the fog or tinnitus or pins and needles returns.
The trick is to start a timed logbook of when symptom showed up, assess a severity score, your own scale say 1-5 is ok, and measure the duration of that symptom.
Symptoms do overlap because they are caused by different things at different points in the gut.
Food intolerances are common too - gluten and dairy are mine.
Start the jab as day one each time. Then look back to see which symptoms repeat after each injection. They are very similar to other symptoms so it can be confusing at first. I get a soft stool on the day after my injection. I know this is going to happen and so when it does, I don't need to be worrying and looking for some other cause.
Pain is an interesting symptom. Initial one would say this is bad because we all try to avoid pain. However, B12 removes the toxin homocysteine which is thought to be the cause of demyelination on the nerves. This is also one of the symptoms of MS.
As the nerve heals the signal is stronger and the brain interprets this as pain. The more stressed you get about it, the worse the pain seems to feel. It you tell yourself it is an illusion in the brain and the healing is good. You relax and the stress goes away. The brain recalibrates over a day or two and the pain also goes away also.
The more you use your muscles, the more nerve repair occurs because the electrical stimulation attracts the right chemicals and amino acids to the sight of the damage on the nerve.
That is one of the reasons I think that getting started is so hard. Once I am up and moving, things get easier for me. I don't have ( or having been diagnosed with) MS.
Short term memory loss is also another symptom of the B12D. The log book helps if you record the times of all your food, drink and meds. You have a symptom and can look back at what you are yesterday.
For me, dairy was first to be isolated. Then soya and MSG issues and finally gluten. I also stopped all alcohol because, although it doesn't react with B12, it consumes all the other B vitamins that B12 needs to do its job.
I also supplement with folic acid to support B12 and B6 to support nerve damage repair. Finally I take a daily multivitamin to support with the other minerals and metals that metabolism needs once it gets B12.
The rush of metabolism that occurs after the B12 injection results in waste product like water that probably causes my soft stool the next day.
Urine color is another good indicator of how well B12 is working. The darker the better. Pale urine for me indicates I'm getting low and I supplement with sublinguals to get through the week.
I'm on weekly cyano-B12. Hydroxocobalamin symptoms I found were similar but drawn out further in time when I lived in the UK.
The symptoms from B12 repeat after each injection and once you know what is what you can relax.
You gain some control back with the logbook and your stress level goes down. Stress consumes B12 so that it doesn't last as long.
When I was diagnosed it was on top of other diagnoses and the PA seemed like the least of it. I really haven't paid it too much attention other than to have my injection every three months. I also take folate and vitamin D as these levels were also low.
It's interesting with what you are saying about the gut and bowel, I am always terribly constipated - as was my gran who was diagnosed in late life. I've always put it down to MS. I had no idea pernicious anaemia could cause these things. It's very interesting that B12 removes the toxin that destroys myelin! Why isn't everyone with MS on B12?
I'll have a good read and think on the things you talk about. Thank you so much for taking the time to write such a comprehensive message.
It occurs to me that neither me, or my dr's are prioritising or thinking too much about pernicious anaemia, as I'm having the B12. It's understandable I think as I've had lots of emergency situations that needed dealing with. I think though, that from what I'm reading that now that as my other diagnoses are established, and being managed it's time to get this one death with properly. I'm thinking it's probably the thing that makes me feel poorly more than anything else. I do recognise this roller coaster effect, but hadn't been able to know what was causing it. Naive of me really to have put PA to the back of my mind as just a small thing on top of everything else. can see it's not a small thing.
I'm really grateful to you all for having taken so much time to reply.
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I know of someone who had to retire early after a MS diagnosis and came here in a wheelchair. Greek Docs soon discovered it was her thyroid - and she is now a very active picture of health. She is on the Thyroid Forum here on HU.
Feeling a little lonely with PA neurological symptoms misunderstood
Vit B12 readings OK but have symptoms of PA
Why don't symptoms of PA go away with treatment?
B12 Deficiency and PA have exactly the same symptoms and effects
symptoms with treated PA
