Officially undiagnosed, awaiting insurance and in a bad way pls help..

[0SK780]

Hi,

I'm female 39 yrs old and very unwell. I can not go to a doctors at this point as I live abroad and need insurance which is currently processing. I have been to a sympathetic doctor under another name who has agreed with me after seeing a full CBC panel that I likely have PA. ( anemia through the board and megaloblastic changes, also after reaching out to family, I also found I have a 1st cousin being tested/treated for suspected PA) I am at the point where my arms won't respond to my commands, I'm stress incontinent and my muscles burn all day, I quit work earlier this year as my memory and function got so bad I couldn't put an email together, now I get confused easily and am often in a state of fugue and panic. I also have had chronic digestive problems for years and have been on anti depressants and acid blockers. (which I no longer take)

I do have access to B12 injectable medication, it's very cheap and obviously I want to start on it as soon as I can, my conundrum is, once I get my levels back up will I be able to be diagnosed? Can the doctor still find PA if I don't have low B12? Can he test my Intrinsic Factor to get a diagnosis?

What would be the most definitive test to diagnose PA after I start b12 injections?

Thank you in advance for any advice.

S

[pvanderaa]

Here in the USA some diagnostic labs add a caveat to blood test results that 10% of the population may exhibit neurological symptoms when the level is below 400 pg/ml. (Same as ng/L).

It sounds like you have neurological damage symptoms already.

Start a logbook of all your symptoms, but especially the neurological ones and assess a daily severity score of your own choosing. Also record your food and drink and medications.

Present the list of symptoms to your GP at each visit. He/she may think you are a total hypochondriac but this is a stage we all go through, especially when asking for more frequent injections. Best to get it over with now.

The logbook helps with short term memory loss as well. The repair of neurological, if possible at all, is very slow. Myelin sheath can get replaced but once the axon is damaged the nerve is gone.

Have you self injected before?maybe start taking a trial set of B12 injections (or B12 supplements) but these will impact any further blood tests and most likely delay the GP decision for B12 injections.

Get your GP to buy into the idea of treating you by monitoring your symptoms rather than further blood tests that may appear "normal" and tempt the GP to stop treatment.

There are government guidelines on how to treat neurological symptoms. Discuss these with your GP.

To repair nerve damage, you want B12 levels from blood tests over the top of the range (>1500 pg/ml) you cannot overdose on B12 or have "toxic" levels as B12 is water soluble and you pee it away.

Good luck getting diagnosed and starting treatment. The important thing is the stop the progression of the nerve damage by getting B12.

What are your blood test results?

Digestive problems can also be related to damage to the vagus nerve. So record all your symptoms.

[0SK780 in reply to pvanderaa]

Thanks Pvanderaa, I'm not under the care of a GP, I just spoke to a sympathetic doctor and showed him my lab CBC results. I have sourced the B12 ampules and am happy to self inject and hoping to start Monday. I do keep a food and symptom log which I do hope to show a doctor once my insurance goes through but for now I'm self treating as I have no choice and obv am desperate to halt the decline of my memory.

Thanks for the clarification on B12 in blood I do keep reading that it's possible to have toxic levels build up though?

Just to clarify, you mean if I do a serum B12 test it would be best to see levels over 1500ml/pg for nerve repair ?

Is there one definitive test to diagnose PA? Maybe the Intrinsic Factor antibodies?

I'm confused about Folate, should I take it (orally) while using B12 injections?

My main blood test showed as below plus quite a few other values in normal range..

hb - 11.5 ref range 12-16 (low)

hct 35.4 ref range 36-47 (low)

RBC 3.62 ref range 3.80-5.40 (low)

MCV 97.7 ref range 80.0-95.0 (high)

I have been taking a methylated high dose b complex pill for a couple of months (before I knew about PA) but it doesn't seemed to have helped at all, my digestive problems have been extreme the last 6 months and I almost feel I'm not absorbing much nutrients at all :/

Thank you again

[wedgewood]

You have had a first - rate answer from pvanderaa. As regards digestion problems , they often come with PA, as the antibodies prevent stomach acid from being made . You have also been on acid blockers which can also result in anhililation of acid. exacerbating loss of stomach acid. This upsets the stomach flora . You need to reinstate that with probiotics - The cheapest is home- made organic sauerkraut ( recipe online)!But you can buy supplements .

The trouble with having PA is that you get the double whammy of having both the intrinsic factor and stomach acid production attacked by the antibodies . So the digestion is hampered - b12 totally , and other vitamins and minerals considerably less well absorbed.

I also use betaine HCL with pepsin and gentian bitters when I eat protein . Otherwise anything acidic like lime juice or organic cider vinegar diluted will .help .

[0SK780 in reply to wedgewood]

Thanks for the input Wedgewood,

Before this PA came to light I had tried betain hcl with pepsin and it works great in helping my constipation, but only when I eat meat (which I don't eat very often as I'm not a fan, especially red meat, I know how ironic that is now!)

I eased off the acid blockers but still feel my esophagus being ravaged by acid, it's better now I don't eat gluten and I also quit milk and caffeine. My diet has become very boring but it's best that way for now.

Thx

S

[Gambit62 Administrator]

B12 isn't toxic - its the treatment of choice for this reason in cases of cyanide poisoning - the amount administered is 5g over 15 minutes intravenously with a follow up dose after 30 minutes if necessary. The main problem with this regime is the amount of fluid being injected which can cause hypertension - raised blood pressure. This means administering 5000-10000 x the amount in a normal ampoule.

A very very few people are allergic to B12 so if you are going to self inject then it is best to have the first done under supervision just in case - but this is very, very rare.

Some people respond to high serum B12 levels in a way that seems to shut down the mechanism that allows B12 to pass from blood to cell - which can cause cells to be left without the B12 they need - this is called functional B12 deficiency. However, the most effective way of treating this seems to be to raise serum B12 levels to a point where the amount in your blood is so much that the response can't block all of it from getting through to your cells - so it isn't a toxicity problem.

PA is a condition that will cause problems absorbing B12 - the usual tests for this are IFA and PCA - both of which are problematic. IFA can certainly be skewed by recent supplementation (leading to false positives) but avoiding this only means not doing the test within 7-10 days of an injection/supplementation - and for some assay methods this period can be as little as 1 day. There is some research to suggest that looking at gastrin levels might be a good indicator of PA but this isn't a recognised test.

Other absorption problems include coeliacs, crohns, lowered stomach acidity (which can be a result of PA), h pylori and tapeworm infections - the later two are treatable so would not require treatment with injections for life. There are also drug interactions that can reduce take up of B12 from food, which includes PPIs because of their effect in lowering stomach acidity.

The symptoms of low stomach acidity are more or less the same as those of high stomach acidity so may be worth getting that investigated anyway if you have problems.

Hope the insurance comes through and you are able to take things forward soon. Possible that new GP and insurance may accept the CBC test that you already have though many GPs prefer to redo tests for themselves which would make supplementation problematic.

[pvanderaa in reply to Gambit62]

Osk870,

The acid reflux symptom is sometimes counterintuitive in that the exact same symptom arises from to much alkaline in the stomach as gambit62 has said. This comes from the bile backing up into the stomach when there is not enough stomach acid.

How does your acid reflux react to orange juice?

Have you tried going gluten free as well?

The folic acid is taken as an oral supplement. I currently take 6x 800 mcg tablets (4.8 mg) that i split into 3 doses (2x each) - morning, noon and night to even out the dosage throughout the day.

The max dose is 5 mg. But get the B12 sorted first and then take as much folic acid as you can manage. There will be new symptoms arising. For me it is thumping in my ears when i turn my head if folic acid is too high / relative to the B12.

It is a balancing act between folic acid and B12 levels in you blood.

You may feel like you are on a roller coaster ride until things level off.

Also be aware of the symptoms of pain. This is also counterintuitive in the repair of nerve damage. As the myelin sheath is replaced, once you get B12 and the homocysteine levels drop, the signal to the brain is stronger and is initially interpreted as pain. It takes 2-3 days for the brain to recalibrate to the stronger signal.

Gentle range of motion exercises (yoga?) can stimulate the nerve repair. The repair of the nerve damage seems to only occur at the sites when the nerve is being used. Moving muscles and doing puzzles stimulates this.

Also telling yourself that the pain is an illusion and working through the pain seems to get the brain to recalibrate faster. The getting started is the hardest part and, if you pace yourself, you may find you can go all day.

Thr logbook also helps you monitor your progress and gives you some control back which helps remove stress. The repair of nerve damage is very slow (months and years, not days and weeks)

Stress consumes B12, but people without PA recover the B12 in the gut. For us with B12D, it goes straight down the drain.

Thanks,

Paul

[0SK780]

Thanks Gambit62 + Pvanderra,

I had my first injection on Friday at the clinic but unfortunately they charge too much for the service so I have self injected for the first time today. On Friday I had a pronounced effect from the injection, I felt as if Id been given about 3 espressos with painkillers, I was so wired I had to take a benedryl by 11pm to help me sleep but I did feel all my muscle pain go and my brain went into overdrive with the opposite of my usual brain fog!

Today I am having quite a bit of pain at injection site, I have obv researched how to do it and have the correct equipment but it's worrying, I hope it eases, I will search here for more info on self injection.

I understand I'm in for the long haul for repair, I'm suffering classic symptoms of nerve damage as I mentioned I have stress incontinence, I wonder if that will improve?

I hope to start yoga for sure, I don't have much energy right now but hope with the shots I will feel more motivated

Thanks so much for your input guys, I will update on injections, today I will see if another clinic can help me for a better price as I'm not liking the leg pain I'm having after doing it myself

S