Newly diagnosed with PA. Need encouragement!

[Lyynn123]

Hi everyone. So happy I found this forum. I was just diagnosed 4 weeks ago and started loading injections. To say the least I am overwhelmed and trying to wrap my head around all of this. I have seen improvement in a lot of symptoms like dizziness, blurred vision, numbness and tingling. My headaches are a little better but still the most problem for me. I also just developed gastritis so I’m dealing with that pain as well. I guess at this point I’m just searching for hope. I am trying so hard to not get down and focus and be grateful for the improvements I have seen already but sometimes I feel so alone in this even though I have such a loving and supporting husband. So any words of wisdom, hope, encouragement is so needed and appreciated if you have the time.

[Lyynn123]

I guess one of my main questions are about headaches. How long until any of you saw improvement after treating b12? Or how long until you saw good quality of life again??

[clivealive Forum Support]

Hi Lyynn123 what a lovely smile by the way

Are you in the U.K?

Do you know what your Folate level is as this and the B12 you are having injected work together to make red blood cells.

How long is a piece of string? This sums up the difficulty to answer the question "How long before the symptoms improve....?" because we are all different and a lot will depend on how long you were B12 deficient before treatment started and the amount of damage to your nerves has been incurred.

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 pleased that you have a "supportive husband" as I know from experience that I was often "looked at" with the thoughts "what's wrong with you? You look perfectly healthy to me!" without their knowing that "Pernicious" means fatal - deadly and without our regular jabs of B12 we wouldn't be around any more.

Please feel free to come back with any questions you have as there are some very knowledgeable persons in this community who will be able to give you good advice.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years and I'm still "clivealive" aged 77.

I wish you well.

[Gambit62 Administrator]

Lyynn, the gastritis is more likely than not related to the PA - PA as a name is a bit misleading as it is actually an auto-immune condition that affects the gut (an auto-immune gastritis) that specifically attacks the mechanism that allows most of your B12 to be absorbed in the ileum.

Unfortunately everyone is different when it comes to B12 so it isn't really possible to answer for an individual when specific symptoms will disappear. If you have macrocytic anaemia (larger rounder red blood cells) which is a classic symptom of B12 deficiency that may be what is causing the headaches and that will take a few months to clear.

We all have different journeys. Mine was one of decline for about 15 months after diagnosis and starting treatment and only really recovering when I took things into my own hands ... which was when I discovered that some issues I'd had for decades were actually related to B12.

Take a look at my profile to read more about my story.

[Lyynn123 in reply to Gambit62]

Thank you. Just hearing others journeys and some tid bits of what to kinda expect is helpful in this journey.

[topher2018]

I did the Heidelberg test to see whether my stomach was still making any acid. When it was confirmed it did not make any significant amount of acid I started supplementing each meal with apple cider vinegar and lemon juice diluted in water that I drink through a stainless steel straw to try to keep it away from my teeth. I also take 4-5 HCl pills with each meal. That along with dramatic diet change (I follow the AIP diet) and lots of sauerkraut and other probiotics has helped my gastritis a lot. It had gotten much worse after my diagnosis possibly due to stress from the diagnosis or the effect of the B12 shots (turning up the volume as Clive mentioned) or both. I keep telling myself that even though it is terrifying to be diagnosed with an incurable disease that is likely to or already has significantly impaired a major organ, I am better off now than I have been in at least the last 2-3 years because I am getting B12 and am helping my stomach with supplements to aid digestion. Some days I even believe it. And we have Clive, fbirder, Gambit and the other extremely kind, helpful, and generous folks on this forum to help guide us through this.

[Lyynn123 in reply to topher2018]

Thank you so much for this. I will def look into this test. I have so many questions at this point. So having gastritis from PA doesn’t necessarily mean you have low acid? Could you have gastritis with PA from having too much acid?

[topher2018 in reply to Lyynn123]

One of the others may be able to speak more definitively but based on my understanding you would be extremely unlikely to have too much acid if you have PA. But I would confirm because even diagnosing this disease is hit or miss.

[topher2018]

Did you have headaches before starting B12 shots or only after? I had some dramatic reactions to the shots initially. Vertigo, dizziness, walking into walls etc. don’t know how or why. I still have some reaction when I get methylcobalamin shots. Don’t have the same issue with cyanocobalamin. If you got the headaches after the shots perhaps you need to give it some time or switch B12 types. I also take a sublingual between shots to try to keep things more level but I am not sure those are doing anything.

[Lyynn123 in reply to topher2018]

I was getting headaches before the shots.

[Milley2 in reply to Lyynn123]

Just read your bits

I have similar

Any improvement ?

What frequency if b12 and folate ? Or folic acid ? Did you take

I went low b12 April 124

Struggling since a lot

[topher2018]

Then hopefully the b12 makes it better. Clive has more info about how you also need folate. So supplements and lots of leafy greens are a good idea. Obviously there are lots of other causes of headaches so checking those off would be good. Also might consider getting tested for food allergies and avoid those foods.