Following on from the Parliamentary Reception, I have just been informed that Madeleine Moon has now been granted a debate about Pernicious Anaemia that is scheduled to take place on Wednesday evening. I am now busy trying to put together another Factsheet or Briefing Paper that all M.P.s can read.
Ho Hum
I am watching this issue with real interest as I was recently diagnosed with pernicious anaemia. I also have Type 1 diabetes.
I am seeing my Dr this week (luckily after the EDM) to ask for my injections to be 2monthly at least. I just can’t manage 3 monthly. Last week I thought I had the flu, was laid-up in bed with aches and pains (but no temperature) then realised this was because I’ve ‘run-out’ of B12. I’m now taking it sublingual to tide me over but it seems awful that I’m being made to feel so bad because of medical, entrenched mis-understanding.
I am right behind your work and am sending lots of positive thoughts your way, I will also write to my MP and see if he will support this EDM.
Best wishes
Mary
Martyn well done on the Parliamentary reception, as so many members have mentioned PA seems to lack the individual control it needs and it was good news to hear of the new PA test, no doubt this will not find its way to doctors unless it is pushed hard, and I would welcome this been raised as well
I have found this website by accident…
My Grandmother was diagnosed with pernicious anemia before the Second World War. This is what my family have told me “she had three children 1936 being the last one born. During that time, she suffered with terrible depression and had two nervous breakdowns, one after the other. As the years progressed she was diagnosed with schizophrenia, her husband (my grandfather) divorce her as he could no longer tolerate her depression/illness and the way that she was living. Some years later, grandmother was locked up in a secure area at Moor Haven Hospital in Devon receiving constant, direct electrical treatment to the brain”. Her death certificate shows she died of bronchial cerebral hemorrhage and schizophrenia 14th April 1968 at Moor Haven Hospital.
I am her granddaughter, and suffer with pernicious anemia. I always wondered why I used to fall asleep at school in lessons as a child from utter fatigue, and could never keep up with the ‘others’ in the playground. Through out my life I have always battled with severe fatigue and shortness of breath, with many other symptoms associated with pernicious anemia. For years I have taken ‘pep pills’ for energy, in fact anything I could possibly lay my hands on including a well known supplement of B12, I can honestly say I have shoveled them all down in great quantities. Many times, I have had a split lips and pins and needles to hands and feet, and have complained of this to my doctors on many occasions; I have even had a thyroid ‘blip’ in 2001. The last five years have been truly the worst, there are some days I cannot actually sit up, or stand up. This has affected my working career, due to the pernicious anemia I have not been able to hold down a job, even part time due to the inadequate treatment of one injection of B12 every three months. The “Begging sessions” have been numerous over the years. I was told by one doctor “well let’s see how low you go then”.
My symptoms are shortness of breath, extreme fatigue, poor concentration, short-term memory loss, confusion, and forgetting names and objects, clumsiness, lack of co- ordination, brittle flaky ridged nails, dry skin, mood swings, dizziness and have fainted on more than one occasion, frequently bumping into or falling against walls, general unsteadiness, numbness tingling/ pins and needles of hands and feet, irritability, frustration, depression, impatience, desire for isolation, quiet and peace, aversion to bright lights and crowded spaces, sleep disturbance (even though exhausted , unable to sleep, also and waking tired from sleep) Vertigo and problems swallowing.
The way in which we as patients are treated is dreadful; not one doctor or nurse have I come across truly understands what it does to your life and how you are affected, by just even a few symptoms of pernicious anemia.
I hope this will help others out there, who are as desperate as I am, to “get my life back”.
Dear Julia
Go to
http://www.pernicious-anaemia-society.org
for more help and support
Regards
M
Great job Martyn….. it was a very interesting and educational read. Thanks
Al