Life with Paernicious Anemia

[ack6959]

I want to ask everyone who is suffering with PA

What are your symtoms and how you are dealing with that.

Are you doing your job or profession without problems.

How is your family life.

How much time does it takes to recover from extreme fatigue after taking injections.

Anyone suffering from sleep disturbances like extreme fatigue at daytime and insomnia at night.

Do anyone feel sleepy drowsy at 10am and 3pm daily.

[wedgewood]

Because I self-inject , after years of not being diagnosed , I can keep all symptoms at bay ,except for one which is irreversible because adequate treatment came too late . My feet were totally numb when I started injecting , but have improved to just burning 🔥. I’ve had to learn to put up with this . Otherwise ,all is well .My symptoms improved very quickly once I started self -injecting EOD for a few weeks . Now I just inject weekly to maintain the situation . I take a 400mcg folic acid tablet daily .

I have been self -injecting for 8 years ,after testing positive to Intrinsic Factor Antibodies. (private test ) but was only allowed 1 injection every month . Neither Tablets, oral and sublingual nor sprays had any effect at all . Self-Injecting has saved me .

[Pasjc]

I have PA diagnosed about 12 years ago have B12 injection monthly. Always tired cant walk straight constant sore dry mouth. At times the word fatigue just doesn't explain jow i feel. If ibdont have 2 naps a day i feel very ill

[ack6959 in reply to Pasjc]

So sad to hear that you are suffering from this what is your age what are your symptoms.

[Suzibelle]

Diagnosed in 2013 after dizziness, loss of balance, aphasia, bilateral numbness in both arms from elbows to ring and pinky fingers and absolute, unending exhaustion that would see me asleep on the sofa at 6pm. Started out after loading doses with the (then) recommended 1 injection every 3 months, gradually decreased it to once every 6 weeks under my existing doctor but then another one at the practice bumped it back up to once every 8 weeks, at which point I began to SI. Now self inject every 3 weeks but am considering shortening the interval to fortnightly as I feel rubbish by about 2 weeks in. Symptoms got worse before they got better, which took 3-6 months, and are now mostly held at bay, apart from the fatigue which starts to set in about 10 days after the injection. Don't sleep well but I never did and usually need an occasionally nanna-nap after work from about 2 weeks in! Have been holding down a fairly pressured job all that time without too many problems (apart from occasionally forgetting words and not being able to be as physical as I was) and now work from home so also assist in running the farm. Don't have a lot of energy to do anything else, though, although I was going to the gym and swimming regularly (albeit with having to carefully work out how long I could do either and at what level without crashing and burning) before I moved to the farm full-time. Was also flying aircraft occasionally and doing 12-hour long drives between where I was working and the farm several times a year. The latter usually wiped me out the next day. So you can live a relatively normal life but you have to learn your limits and live by them.

[Lowblow]

Hi .. very sad to read just how hard this makes peoples lives .. sorry to say mine is very similar..

started with hair loss /breakage, brittle nails, went on to vision deterioration, struggling to mobilise and really stiff legs, headaches, dizziness, muffled hearing, cold sores and cracked lips , breathlessness and brain fog..

finallly started 6 loading doses anc then 3 monthly injections after 2 years of these symptoms

Paid privately and was confirmed PA low folate, vitamin d and ferritin to go along with b12 deficiency

Managed to get jabs increased to 2 monthly but have continued symptoms which ease a little after jab

Sore burning feet and legs

Pins and needles in feet, big toe and forearms feel numb

Partial lose of taste and smell

Hearing loss

Tinnitus

Vision has deteriorated

Brain feels scrambled

Struggle to say correct words and speech is becoming very frustrating

Terrible memory

Fatigue is terrible

Need to get the courage to self inject, but am still fighting the doctor who does not accept that any of this is related to b12 as I’m now over range on a blood test that should not have been done

As you can see I was treated as somebody without neurological symptoms when it was clear that I had neurological symptoms

So frustrating

I struggle to work but have no choice, I’m exhausted and in pain by the end of the day

My feet feel like I’m walking on glass

I wish you all well