Posted , 5 users are following.
Hi I've been diagnosed with pernicious anaemia for around 15 years. I'm 46. 2/3 times a year I'm "floored" with exhaustion/fatigue/ lowrr back and stomach pain/aching limbs and joints/headaches Usually resulting in 3/4 days off work......i always thought this was a urine infection. Could this be a symptom of my PA?
many thanks for any advice
1 like, 6 replies
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Dena58 Woodvalewest
Posted
You can join the Pernicious Anemia Support Group in Facebook. They have a great protocol and lifesaving information on cofactors. Cofactors are nutrients your body needs to have in order for it to properly use B12 and make it active.
The standard treatment usually is not enough to prevent permanent damage. Without proper care PA can be fatal so getting good research in is very important.
I am 59, diagnosed 9 years ago with PA with Intrinsic Factor Antibody. I had been bedridden for 2 years by then. It took another 2 years to be functioning again. Many symptoms have improved greatly but after been deficient for too long, it is permanent. Damaged short term memory, stomach issues, neurology damage etc.
I hope you find the information you need so you can begin healing.
clivealive Woodvalewest
Posted
Hi there, Are you in the UK?
Are you saying that you have been diagnosed with P.A.?
If so what frequency of B12 injections are you on perhaps you aren't "getting enough"
The neurological symptoms of vitamin B12 deficiency may include:
? Numbness and tingling of the arms and more commonly the legs
? Difficulty walking
? Loss of balance
? Hands feel gloved with loss of sensitivity
? Loss of vibration sense, having to look down to see where you are walking
? Unable to close your eyes and stand on one foot
? Night vision
? Memory loss
? Disorientation
? Dementia
? Extreme mood changes
? Short term memory loss
Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.
Do you know what your Folate level is?
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. Some symptoms of folate deficiency are similar to those of B12 deficiency.
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
Do you know what your Vitamin D level is? That seems to be "flavour of the month" with doctors at the moment and symptoms of a deficiency can make you feel quite poorly.
Symptoms of vitamin D deficiency.
Getting Sick or Infected Often. ...
Fatigue and Tiredness. ...
Bone and Back Pain. ...
Depression. ...
Impaired Wound Healing. ...
Bone Loss. ...
Hair Loss. ...
Muscle Pain.
I am not a medically trained person but have had P.A. for more than 45 years.
I hope the above helps and I wish you well
debbyog1 Woodvalewest
Posted
Hi
I have a same experience with periodic 'crashes'. I have also been having B12 injections for a few years now.
I have been seeing an Endocronologist recently to try to get to the bottom of this issue.
I'll let you know how I get on.
Deb
Woodvalewest debbyog1
Posted
Hi debyog1
Thanks for your response. I'm interested to hear how you get on. I hope you get sorted soon x
Woodvalewest
Posted
Hi both thanks so much for your replies. Yes I have injections every three months and have since diagnosed. Like I mentioned I'm "floored" a couple of times a year with symptoms I listed and have been trying to "join the dots" for a while but GP always say urine infection give me antibiotics then the urine sample always comes back clear with no infection.
I'm good to start taking additional folate and a multivitamin snd see if that lessons these "episodes "
Thanks again for your replies.
Should have said I'm in Scotland
clivealive Woodvalewest
Posted
As I say I've had P.A. for more than 45 years and six or seven years ago I began noticing a return of symptoms in the run up to the next injection. However, my "one size fits all" doctor refused to alter the prescription to increase the frequency. I joined the Pernicious Anaemia Society in 2010 and posed the question on their then forum "Am I the only person in the world to feel the need for more frequent injections in the run up to my next one?" and I was astounded by the response and to learn that "I was not alone"
If you have P.A and have neurological symptoms your doctor should give you injections every eight weeks (not twelve) in accordance with the N.I.C.E guidelines for the treatment of "Anaemia - B12 and Folate Deficiency - NICE CKS". If you type this into your search engine, open the link, click on "Scenario:Management" and scroll down this tells your doctor how to treat you.
Hopefully doctors in Scotland adhere to the same guidelines. The British National Formulary (B.N.F. - the doctor's Bible) guidelines are the same as the N.I.C.E. and your doctor should have a copy on his desk.
I "won my battle" with my doctor and now have more frequent injections. It's good to see you are supplementing with folic acid.
I wish you well.