Having twice weekly injections since my loading dose in mid December as I still have lots of neuro symptoms. Feeling generally better, but have woken up with migraines the last 4 mornings after they were really improving, and felt v sick this morning 🙄 Every day is an unknown! Had about 30/40 different things tested - including homocysteine, intrinsic factor and parietal cell antibodies, and they're all normal except for the original low B12 🤷🏼♀️ GP has referred me to a neurologist to 'rule out' MS, and I'm seeing an ophthalmologist next week for fuzzy vision. And a 💩 test to do for H pylori bacteria as I'm having a lot of gastric issues, particularly since starting injections. Has anyone else found H pylori to be the cause of their deficiency? And can low B12 happen alongside MS?? How can everything be normal when I'm feeling so ABnormal???
So apparently I'm normal...but I'm de... - Pernicious Anaemi...
So apparently I'm normal...but I'm definitely perplexed!
When I was most ill ,my bloods were also 'in range' I also had gastric issues
Migraines
Vertigo
Tinnitus
Severe vision problems as some of my worst symptoms.
A brain MRI showed some abnormalities but 'nothing sinister ' their Termin.ology .
I saw 3 tiers of Opthalmologists.
Eyes were normal.
So must be brain to eye signals disturbed.
MS often a mis diagnosis
For me the hormonal changes in the menopause and lowered stomach acid triggered my b12 deficiency.
Have to date nothing else found.
It's very early days for you.
Just keep going with your b12 regime and tests offered ruling other things out
Thank you Nackapan, I have almost exactly the same symptoms although my sight is less severely affected.
My GP seems to be doing a good job compared to some of the horror stories here, and in fact when I gave him my completed copy of the PA symptom checklist he said he'd check out the website. I warned him he might read some less than complimentary stuff about patients' experiences... He is also perplexed but still wants to find the root cause.
And willing to continue injections in the meantime...🙏
Your gp sounds a breath of fresh air with his attitude. Are all the tests via the NHS?
Yes, all NHS. I'm so grateful! This forum prepared me for the worst so I've made strenuous efforts to keep him onside in the way I've presented symptoms, etc. My husband says the GP is my project, not 100%wrong!
Forgot to mention my B12 was the only thing 'out of range' very low.Initiated B12 loading doses .
Only then did my ferritin drop and I started supplementing prescription iron.
Folic acid otc along with a multivit .
I was told dietary .
I was 4zting the same diet as when well!!
Veg meat pulses diary ++ nothing eliminated .
It was not dietary.
IFAB eas not done .
Parietal antibody test negative.
Brain CT
Brain MRI
Bloods were done 3-4 monthly .
Had a trial of amytripyline then HRT in an attempt to reduce daily migraines.
.only lasted around o days on both
Refused ? 5 lots of antidepressants.
Saw 3 neurologists.
A pysio specialising in vestibulardisturbances to get me walking again.
3 tiers of opticians
A neuro opthalmologist I waited 18m to see.
That was the lowest moment .
A long journey for me to basically be told the health of my eyes normal .
The brain is complicated.
? MH anxiety
At which point I switched off .
Back to square one.
( later saw the letter to Gp signed locum Opthalmologist???
I waited to see a Neuro Opthalmologist
hoping at least to get some 4xplanation of Brain messaging to eye disturbance .
Had a repeat Brain and this time upper cervical MRI a year later .
Unsure why whole spine not done.
It's taken years to gradually make steady progress with blips with regular b12 injections I've fought to keep on my prescription.
On no other meds prior to vit D and B12 deficiency then ferritin.
Only on B12 now .
OTC pain relief if needed .
Still have regular bloods.
Cholesterol higher now ??
Also B.p ( was always low)
That may be the vicious circle of not being able to exercise enough.
I've increased walking though thank goodness as going round thd block daily know every local cat and wall I'd sit and pause on like a teenager again ,waiting to be told to get off lol
!! Ethics now I coukdnt / wouldn't
Things do improve .
Everyone at a different pace depending on how deficient, how early treated and keeping the frequency up.
I went through 6 gps until after a 'sit in ' waiting to see the practice Manager.
Saw a Gp never never before ( still not seen that Practice Manager as thought Gp calling me in !!
She listened .
No idea about B12 but believed me eventually that I never was depressed or had mental health problems despite my appearance and duckinv of from lights wearing a hat.
This Gp asked me to remove dark glasses and hat.
She stopped me from falling . Saw me shake .
She never asked again !!
Fortunately the pysio witnessed thus when I forgot to put my hat on leaving her room.
She came out and said she woujd record what she'd seen.
Not an 'act ' after all!!!
Bright lights 'hit' me.
Pains showing through my head then;
Shaking.
Staggering.
Bouncng off walls.
Also othef things
Crying in frustration ( cross as thought woykd convince them I'm depressed)
Silent sit in to get my B12 injection refused
Told addictive to B12! Ect ect.
Sounds like you have an excellent G.p who is interested and wanting to help you .
They may nevef get to thd cause.
Mine didn't.
She did however promise my b12 woukd never be stopped as she saw only thing that helped.
Also said I woujd get myself better !!
That surgery shut so forced to change Gp's.
My B12 pr4scription has been stopped several times.
Have my own stash as well.
However so far reinstated my b12 prescription 2 weekly and that's on my notes .
Stick with that G.p .
You've had far more tests than I got .
It's a case of elimination.
So we're your loafing doses triggered by a low serum b12 test?
Did you get an Intrinsic factor antibody test?
There's not a definitive test for Pernicious anaemia.
This test reveals about 50% of those with the autoimmune disorder.
Sometimes needing g several tests to obtain a positive result .
What you do need is the right treatment.
Very few once on B12 Injections can cope without ( unless a dietary cause) and swap to tablets or sprays .
My trial is on my medical record .
I took oral b12 in the attempt to reduce b12 injections .
Very disappointed they did nothing .
It's frustrating you may never know the cause as their are complex reasons for absorbtion issues .
All absorbtion issues need the same treatment.
Regular B12 injections to manage the condition .
So it's a complete nonsense only those with a PA diagnosis needs them.
Ignorance in fact .
The many surgeries using this ad z criteria to stop much needed b12.
It's back to.
Clinical response
Elimination of anything else going on.
Until more is understood.
I really hope you get some answers bug most of all the right treatment to start reducing / stopping the many symptoms of this deficiency.
I really appreciate your extensive reply, and I'm sorry that your journey has been so long and difficult. I absolutely hate the gaslighting so many people here have experienced - if your symptoms aren't fully understood or don't fall into an accepted pattern then you must be hypochondriac or depressed! It makes me wonder what relationship some health professionals have with their own bodies, if they can't allow us to have our individual, non textbook experiences...
Forgot to answer that yes, all this triggered by low serum B12. GP has mentioned oral supplements but I've said I think I'm too poorly for that yet but will consider it down the line. I don't think I will though... my diet is B12 high so I'm clearly not absorbing and I can't see that reversing.
Hi Myoldcat,
I am sorry that you are unwell. Good to read about a supportive GP. So you had :-
Low B12 test on a time, date.
Loading doses for 2 weeks from date until date.
Then twice weekly.
Your neurological symptoms persist, migraines and gastrointestinal symptoms have worsened. I see you are a member of the Pernicious Anaemia Society as you gave them literature. The Intrinsic Factor is only 50% accurate.
P.A./B12D is misunderstood and poorly recognised but it can mimic Multiple Sclerosis. It is good you are referred to a neurologist. With regards to MS and PA/B12D - Dr Joseph’s Chandy’s book, Vitamin B12 Deficiency in Clinical Practice discusses this at length.
Often we are deficient in other vital amines (vitamins) and minerals. These are called co-factors. So, taking a B complex or multivitamin/mineral can be beneficial. You should have had ferritin, Vitamin D and folate checked too.
Please get all your results printed out and keep a diary of all appointments, symptoms
Like Nackapan said it is early days and recovery can take a long time.
PA/B12D is not a broken arm or leg, it affects the Central and Peripheral Nervous System which is extremely intricate, complex. Even when we are doing ‘nothing’ it is quite busily working away making sure our hearts are beating, our lungs are inflating, our blood is pumping etc.
In answer to your question, how can everything be normal when you feel abnormal - you have a diagnosis of PA/B12 deficiency. There are 300 trillion cells in the human body - B12 is required in every single one. There are 7 trillion nerves in the human body. B12 helps make the outer covering of nerves so, we can experience pain, burning, pins and needles, numbness and formication (the feeling that insects are under the skin).
I hope it goes well with neurologist, ophthalmologist. In answer to your question can H.pylori be root cause for B12D, some people have reported that. There is a wide range of causes.
Best wishes.
🐳
Thank you for describing the nervous system that way Narwhal10; so of course it make sense that recovery will be slow and not always linear. I will read Dr Chandy's book. My surgery has printed my results so far, we're up to 5 A4 sheets now and that's without the most recent parietal/liver antibody tests. I've never been so thoroughly checked over! And many thanks for the B12/MS infographic too.
Absolutely Myoldcat,
Great to read that you have been thoroughly checked.
The linear bit is superbly important. Many of us have a ‘daily routine’ in living activities such as make a hot drink on waking, shower, dress, breakfast, feed birds etc. However, there are so many ‘tasks’ we have to attend to which are curve balls - boiler breaking down - 😤 which requires more activity.
Cornwaller is spot on with recommendations and magnesium is superbly important for the brain. Magnesium threonate passes more readily across the brain’s membranes. Doctors have limited knowledge of dietetics (minerals, vitamins and amino acids). It is not their fault as nutrition is not on their syllabus.
In the future, if you are planning a lovely night out (theatre for me) or just a little celebration, the next day, many of us have a lull. I generally curl up on my sofa with a cheeky grin knowing it was so worth it. A rule of thumb is prioritising tasks and choosing wisely where to expend energy.
All the best
Brilliant post, and love the thought of you with a well-earned cheeky grin - made me smile, as I collapse after a hectic day yesterday x
I'm still reluctant to accept I can't do what I want when I want, despite having days when I can't get off the sofa. Love theatre outings but now matinées not evenings. I know if it's been too much when I get to my home station, look at the 30 odd steps up to street level and think 'really?'. So becoming more picky and only go to see good stuff now! And am campaigning for a station elevator...
I know it is very difficult not being able to do what you want. You are allowed to be fed up, angry but then it is wiser to think of taking it a day at a time.
I did 6 months practically bed-bound but I am a complete ‘weirdo’ - introverted, nerdy and for over 20 years I have been very interested in the brain, the mind and the subconscious. Meditation has been a way of life for most of my adult life.
Great about campaigning for a lift. This disease/illness is a journey and we do meet some wonderful people on it.
x
Ha ha not weird - I'm also a meditator and fascinated by the mind/body connection. Which is immensely powerful and has allowed me to push through a lot, but B12 deficiency has subverted both body and mind, very disconcerting! However, I have found this amazing community without which I would really be struggling to stay positive.
Wonderful about meditation. B12D (magnesium deficiency and other co-factors) can put a big spanner in the works. Meditation helps people manage having a bit of a ‘wonky’ brain and a nervous system that is a little ‘haywire’.
However, Myoldcat, it is early days for you, the priority is investigations and optimal treatment. Hopefully, things will fall into place and you will be free of migraines. They are right little unwanted devils and particularly debilitating.
I will pop on tomorrow to see how you are. Take good care. 🐳
I found supplementation with Taurine helpful with my tendency to develop migraines and my fuzzy head when I didn't have a migraine. I also take a range of other supplements such as D, K, Magnesium threonate, glycine, folate so I can't be sure it was just the Taurine but the migraines stopped once I was on Taurine.
Best wishes
Brilliant advice Cornwaller. I haven't wanted to muddy the waters by supplementing before all these tests, but I can see there are a few things I need to try and now Taurine is on the list along with the threonate form of Magnesium.
Fingers crossed you find something that helps.
Thank you, I guess patience is key!
Do you recommend any specific Taurine and Mag threonate supplements Cornwaller?
Not really... I went on a well known online retailer site and bought Magnesium threonate from Time Health and taurine capsules from Next Level Performance based on reviews and price and frankly whim. So I can't really recommend them vis a vee any other manufacturer. I read up the dosing and gave it a go. As a bonus Magnesium threonate is generally said to help with sleep and my experience is that it subtly helps.
Well as long as they work, that's the most important thing. Thank you for sharing.
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