Belsfield: Can anyone tell me what... - Pernicious Anaemi...

Pernicious Anaemia Society

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Belsfield

Belsfield
Belsfield

Can anyone tell me what exactly is termed as neurological symptoms? GP didnt seem interested just said I was to be on injections forever. Had injections since but only helps for about a week and then I am back to palpations, dizziness, confusion etc. Mentioned to the nurse when getting jag but was told no more tests would be done, as you are only allowed one blood test when diagnosed. Feel that nobody believes how unwell I feel. Thanks.

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From the PAS website - pernicious-anaemia-society....

Neurological Symptoms

Balance Problems

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

Burning Legs and/or Feet

Neuropathic Pain/Fibromyalgia

Vertigo

Tinnitus

Sensory Impairment

More info on each on the site itself.

Belsfield
Belsfield in reply to fbirder

Thank you for your reply, big help will be back to GP as soon as possible.

I’m assuming that you have had loading doses i.e. 6 injections over 2 weeks ? That is the norm once you have been diagnosed with P.A. Then if you have neurological symptoms , loading doses to continue until no more improvement. If you have not been diagnosed early enough , some symptoms may be permanent . There after, one injection every 2 months . This may also prove insufficient to keep you feeling well . Then you may have to self-inject, as many of us do, to keep feeling well. Testing is not necessary once you are receiving injections .Best wishes .

Belsfield
Belsfield in reply to wedgewood

Thank you for your info, wedgewood.

Hi! Welcome to our group! I don't think anyone can know how bad we feel unless they have experienced it. I'm glad my memory was so bad when I was at my worst because I don't want to remember feeling like that!!! 😁 It does mean you will get lots of sympathy and help here though!

You are best NOT tested once treatment starts as your levels will show up high even though you feel terrible. If you're not careful someone even more ignorant will stop your jabs because they show up as high!

Please read through past replies, especially those from Sleepybunny, Foggyme, Gambit64 and Clivealive on symptoms, treatment protocols and how to get it from Polaris, Wedgwood, some others whose online names I can't think of (I need my jab this morning!) but who have excellent answers with ours, and myself on self treatment, including self injections and all you need! To find them, look through other posts, double click on their names and look under the replies tab. Sorry not to be more helpful but I must be off to work!

Then please come back to us for more specific help and advice.

Good luck!

Thank you Denisein milden

Hi,

Link about B12 deficiency Symptoms

b12deficiency.info/signs-an...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

More b12 info in pinned posts on forum. I've writtem some very detailed replies in past two days. May be worth searching for them.

I am not medically trained.

If you have had PA long enough, the damage is done. My went undiagnosed for 15 years. Had every test under the sun amd a multitude of Drs. No one ever tested for B12. My symptoms are not only permanent, but they still progress even with weekly injections. Best of luck with yours, and remember to be your own advocate.

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