I’ve had help from The society. They have advised me what to take in, what to say etc. Been to 3 GP’s and same answer. They are being directed from above and have had meetings over it. They are like a German political party in the 1930’s.
Even tied the local MP who was absolutely atrocious.”I’m sure they are doing the best for your daughter. You need to trust them as they know what they are talking about. Would you like a cup of tea?”
Your MP might like to know that PA/B12 deficiency with subsequent nerve damage has been debated in the House of Lords:
"To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed." Countess of Mar - Crossbench
Martyn Hooper also spoke in the House of Lords of the needless suffering and expensive treatment that would be unnecessary if this serious condition was diagnosed in the early stages.
I wrote to my MP about three years ago, asking that the letter be passed on to Sarah Wollaston, but it was dealt with by Jeremy Hunt, the Health Secretary (who was recently found to have failed to declare a business interest). His reply was five pages of b.......s, in which he declared PA "a rare disease" 😳
For the life of me, I cannot see what more can be done. There is something very wrong with a system that denies concrete evidence of serious neglect with such dire consequences.
Well just had a call off a Dr I contacted a couple of days ago. He is private and he’s said he is 200% positive my daughters has PA. He will see us tomorrow but wants to meet the whole family as it’s inherited (probably from my wife). He also apologised for the treatment we have had from his colleagues, but said they just don’t understand the condition. He’s a little more forgiving than myself. Don’t know what to expect but we have very little choice unfortunately. Would of liked to use the NHS but they are a bunch of *********s (fill the missing letters)
Sorry to hear you are having so many problems. Unfortunately it's part for the course these days. If you do end up down the self injection route then:
I would say your Daughter needs to learn to self-inject herself. Unless there is a physical disablement reason she cannot handle needles and syringes with instruction. She will probably have to do it herself for the rest of her life if it is PA so best to start now.
As others will probably note; folate and iron levels need to be watched too. Supplement as needed but be careful not to exceed recommended iron doses as it is hard to get rid of if too much is taken.
Bravo Dadvatar, l left my surgery in December, as I had B12 of 176 after a month of sublingual. Sometime before I had gone in with a list of symptoms to be greeted by the Dr from hell asking questions like I was a simpleton or someone in need of mental health medication. At the time I never new of PA or B12 def. I remember coming out and saying to my dear wife "that f*****Dr thinks I am a nutter" excuse language. Anyway the new surgery is just as useless. I am self injecting now still every other day, I have used up twenty vials now and apart from some numbness still in one leg, haven't felt better for twenty years.
If you can't beat them, then f*** 'em.
Don't get me started on how they treated my wife, which is just coming to light. (See MPN Voice) another health unlocked.com site.
It saddens me to read your post. My son and I were in the same position as you and your daughter. I was told by every doctor from here to London that there was nothing medically wrong with my son. This started at 10 years old.
His health deteriorated over the years to the point he only went to school 40% of the school year so I also had the school on my case.
After a ‘top’ neurologist said there was nothing wrong with him I must admit I cried tears of frustration.
In desperation as a family we decided to try private blood test with Medichecks (my son was 16 at this point) and I just rang them up and said this is what the NHS have tested him on, what other tests do you do? They gave me a few that haven’t been run before. One of them was B12. It was the first time i’d Heard of it. So I searched the internet found this site and read Martin Hoopers books and joined the PAS. Best thing I ever did.
Then I found a private gp, as like you we got no where at our local surgery. The private gp was amazing. He wasn’t particularly knowledgeable about B12 but he listened. He was impressed with my research, saddened by our story and tried his best to help. Boy did it help. He put us on to a haemotologist and he personally went through everything with the haemotologist before we saw him and without a shadow of doubt agreed B12 injections immediately based on symptoms and test results. My sons b12 was about 104 at that point.
Our local GP couldn’t argue with the findings and my son now has monthly injections at the surgery and if he needed a top up we paid privately for one (about £50 a time). Now that he is 18 I can top him up at home with SI (he wasn’t brave enough before!)
Not everyone can afford to go private, it wasn’t that we particularly could either.
I realise my son was older upon finally getting the right diagnosis so it’s even more limiting for you.
I don’t know if our story helps you. I just wanted to let you know you are not alone. Keep going.
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it’s confirmed! I had spinal cord compression on top of my PA symptoms!
serum folate 4.4ug/L, serum vit B12 67ng/L
Private blood test results - GP app booked, what can I say?
b12 levels normal but ive read they are actually quite low
Help with test results! 
