Is this my pernicious anemia declining?

[megleigh17]

I’ve been having a lot of symptoms recently and I’m wondering if they are PA related.

For months I’ve been having dizziness, particularly when I’m doing things. It then knocks me out and makes me feel lethargic for the rest of the day.

For 2 weeks I’ve had headaches in the left hand side of my head, and occasionally feels like it’s inside my ear.

On Thursday i had another dizzy spell which threw me off my feet for the night: I woke on Friday feeling off. Friday night the pain in the left hand side of my head starts, very painful. I went to bed and woke up with the exact same pain on Saturday, hours later persistent dizziness, to the point where standing is difficult. Pins and needles starting in my left hand.

Sunday morning I’ve woken up and the pain has subsided but on and off numbness in my left foot, part of leg and in my left hand. Also having funny electricity feeling up the base of my neck. Still feeling very dizzy, with a heavy head and Unsteady. My ear is on and off thumping and ringing.

I feel so awful. I’m due a full blood test tomorrow but is there anything else I should do?

Thanks!

[clivealive Forum Support]

Hi megleigh17 are you in the U.K?

Have you been diagnosed with P.A?

If so, are you being given Vitamin B12 injections and at what frequency and how long ago was your last one?

Do you know what your Folate level is?

I am not a medically trained person but there are others on here who will be able to give you good advice if you can provide more details.

I wish you well.

[megleigh17 in reply to clivealive]

Hi Clive,

Yes I’m in the UK.

I was diagnosed with PA jan 2018, getting injections every 12 weeks. I last had one 3 weeks ago. Not sure what folate level is. Last July it was 3.0 but no one told me until a few days ago.

X

[clivealive Forum Support in reply to megleigh17]

I wondered how yo managed to join on 4th February when it's still only the 3rd in the U.K.

You are probably entitled to have injections every eight weeks according to the latest B.N.F Guidelines.

bnf.nice.org.uk/drug/hydrox...

Indications and dose

For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Ask about you Folate as 3.0 sounds to be borderline deficient.

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Goodnight.

[Foggyme Administrator]

Hi Megleigh17. I'm so sorry to hear that you've become so unwell, especially over the last few days.

For reason unknown, those with PA can sometimes suffer a decline and start to experience more symptoms, even after being apparently 'stable' for some time. However...

Your symptoms, as you describe them, do not appear to be the typical symptoms of this type of decline or those of B12 deficiency associated with PA. In particular, the fact that the symptoms all appear to be left-sided (neurolgical symptoms associated with PA are not usually experienced on one side of the body only). In addition, if some of the symptoms came on quickly, and are worsening rapidly, rather than declining slowly over time, then this is again, not typical of PA.

You say that are feeling awful. I suggest that if you begin to feel worse during the night...ring 111 and ask their advice (or go straight to an A & E department). Especially if you become confused, suffer loss of consciousness, have slurred speech, facial drooping, weakness in your arms, legs or face, sudden loss of balance/trouble walking, dizziness, loss of vision, sever headache, fatigue, loss of swallowing reflex, loss of sensation, heart palpitations, vomiting...

You probably recognise these as some of the symptoms of a stroke...but they can be symptoms of other things too. So, I'm not suggesting that you are having a stoke...just that these are not typical symptoms of your known medical condition (PA)...and the cause can only be determined via medical examination by a doctor.

Something is clearly amiss and outside of the ordinary (for you) so it's always better to 'play-it-safe' and, in cases like this, seek medical advice...even if for your own peace of mind.

Whatever you decide to do tonight, I'd certainly see your GP tomorrow morning (urgent appointment) so that they can assess your condition. If you are unable to get an appointment with your GP, suggest you proceed down the 111 route or, as above, go directly to A & E.

Unless, of course, you are suddenly much improved...but I suspect that the fact you've posted here means that you are in fact feeling very very awful and are probably quite worried. So, best get seen and assessed by a medical.

Good luck with whatever you decide to do and let us know how it goes 👍

[Nackapan]

When I had very similar symptoms but on my right side I was sent for a brain MRI scan and I actually saw a neurologist privately as still haven't seen one in the NHS yet. Also a cT scan to rule out any slow bleeds as I had 2 bad falls.

On my case the ideas given were vestibular migraines and vertigo. Im on B12 injections every other day at prrsent. My intriscic factor came back as negative. and did Cawthorne exercises for dizziness. So I would get checked out. I went to a and e when the pain over my right eye bad and the electric waves at the back of my neck also my head so heavy throwing me back although stuck to the pillow. All very scary. The CT scan done and thankfully clear. then waited for mri. That not so clear. ( the neurologist not concerned with the mri report and said some lesions ect will be on it. ) then found out b12 deficient. I was told not typical b12 defiency symptoms. Have made improvements being treated with b12. But that is me.I was also told I was having panic atracks! !! I wasn't and offered so many anti depressants that so far are untouched. When these symptoms hit me I was very stressed looking after 2 family members and b12 106 serum blood test.

I hope you get tested and ferritin levels ect and everything gone through to hopefully find a cause to treat. I've never received a full explanation. So continuing with every other day until no further improvement. No other drugs or medical conditions. Improvrmrnts ate being made. The neurologist decided that. I wish you well. Hope that helps