Newly diagnosed with PA which scared the life out of me on the last May bank holiday weekend, physical symptoms dizziness rapid heart beat, out of breath,nauseous.
I could deal with the physical symptoms but had a real feeling of impending doom which was frightening.
Took myself to A+E (ED) had blood tests and kept in overnight was going to get a blood transfusion because my count was so low,but consultant the next day suggested 6 shots of B12 over two weeks which I've had.
Now in the hands of my GP awaiting futher blood tests results.
Although I feel about 70% of my normal strength back, I still get light headed especially lying down in bed or when I turn on to my left hand side.
Just reaching out to those of you with similar experiences and who've been are further down the road in treatment and your journey.
Many thanks x
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Odaat
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5 mg of folic acid is more than 10 times the recommended dose. So it’s normally prescribed just to get low levels up to normal. After that most people do OK with the folate in food (leafy, green veg, seeds, nuts pulses) along with a supplement of 400 mcg of folic acid a day.
Many people do OK with an injection every three months. Others need them more frequently. Keep a diary of your symptoms (try to score them 1 to 10) to see if they get worse before injections.
Has your doc tested you for peripheral neuropathy (looking for tingling/numbness in your toes)? If you have that then you should be on injections every 8 weeks.
Yes, my doctor told me back in 1972 that I only had two years to live unless I either ate raw liver three times a day of had B12 injections for the rest of my life.
I love baked liver with onions and gravy but didn't fancy it raw so I opted for the injections.
The six "loading doses" of B12 which you've had are to massively boost your levels and thereafter you will be put on a "maintenance" injection every two or three months depending on whether or not you still experience any neurological symptoms.
As to the Folate you've probably been prescribed them for three months or so. Your level should be re-tested then to see if you need to continue supplementing. Folate is normally sourced by eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc and folic acid can now be found in may breakfast cereals.
Be aware it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.
I am like clivealive I am 66 and have pa I was diagnosed 37 years ago. I have to tweak my treatment every now Nd gain but with the help of people on here you normally find a solution. I take folic acid prescribed by the doctor 5mg daily as they need it I am also prescribed vitamin d. I am having tests on my iron at the moment as I am very breathless. My injections are every three months with doc and self inject at home My life is good on the whole I don’t miss out on anything I think the main thing is too learn to listen to your body and treat it with love and kindness Good luck 😉 life is good x x
PA is an auto-immune disease. Having one auto-immune condition can increase chances of developing another. Has GP excluded possibility of other conditions eg Coeliac disease, Thyroid problems?
Quite a few on this forum have thyroid problems. May be worth putting any thyroid results on Thyroid Uk forum on HU. in UK, Gps often only test TSH which will not give full picture of thyroid function. There are other possible thyroid tests.
Hi Sleppybunny yes in the UK thanks for the information and links, I do have balance problems which i thought was dizziness, and tinnitus.
My next GP appointment is worryingly in two weeks but I was given 5 shots of B12 in vials by the hospital pharmacy with your information I'm thinking I should get some syringes and self inject until my appointment.
Would this cause any issues with the treatment being organised by my doctor?
I will ask for a referral to haematology.
And contact/join PAS.
Any info on self injecting and picking up the right equipment in the UK.
If you have concerns about your treatment, I would suggest joining and talking to PAS before next appt.
PAS can sometimes intervene on behalf of PAS members. There are stories on Martyn Hooper's blog about how PAS has supported members.
"I do have balance problems which i thought was dizziness, and tinnitus."
These would usually be considered as neuro symptoms.
Would suggest you take info on UK B12 treatment for those with neuro symptoms to any appt as sadly some UK doctors are unaware that where neuro symptoms are present, treatment should be more intensive.
UK GPs will probably have a copy of BNF (British National Formulary) on their desk. If they turn to Chapter 9 Section 1.2 it lists recommended treatment for those with B12 deficiency with neuro symptoms.
Might also be worth writing a brief, polite letter to GP prior to next appt listing any concerns, supportive extracts from UK b12 documents, neuro symptoms etc.
In UK, my understanding is that letters to GP are filed with medical notes so are a record of issues raised. In my opinion, a letter to GPs is less likely to be ignored than info discussed in appt or info on copies handed over.
If GP is reluctant to consider following neurological b12 treatment regime, may be worth pointing out in a letter or discussion the potential consequences of Under Treatment of B12 deficiency with neuro symptoms.
I think it is a good idea to take a supportive person with you to appts. My opinion is that GPs are likely to be kinder if a witness is present. Some people on forum have had difficult experiences trying to get B12 treatment. Even better in my opinion, if person with patient has read up about b12 and is willing to speak up on behalf of patient.
Words of warning.....
Some GPs find it difficult to deal with assertive patients and GP/patient relationship may be affected.
I also think it is worth getting proof of PA diagnosis eg copies of medical records/test results/doctors' letters confirming diagnosis. Some forum members have had injections stopped at some point and when they tried to get them reinstated were told there was no PA diagnosis in their records. Lots of stories on Martyn Hooper's blog about injections being stopped.
Help for GPs
PAS website has section for health professionals which your GP may find of interest. They can join PAS for free as associate members.
Hi Odaat. I suffer from B12 deficiency. My GP won't diagnose me with PA as back in 2015 my initial tests showed a very low B12, but proved' (with a 50% reliable test 😏) that I have intrinsic factor, despite the fact that my mother definitely, and probably grandmother had PA, my mum remembers her mincing raw liver!! I had many scarey physical symptoms but it was the cognitive deficiencies that would eventually lead to me losing my career.
The scarey stuff included what you describe, eventually having episodes of being unable to get out of bed because of the 'dizziness' you describe.
I am now VERY well, having taken my health into my own hands. After a few years of keeping a symptom diary and trying different forms of B12, I now self inject every 2 weeks, take a broad spectrum mineral and vitamin supplement, magnesium and folic acid. So there is a huge light at the end of your tunnel Odaat.
Can I encourage you to get as much information from the people and information on this forum and the PA society so that you can be well informed when you go to your GP. In fairness, GP's are generalists who had a couple of hours training in this initially, and unless they have taken the time to research forms of B12 deficiency are following outdated and downright wrong guidelines!
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