Be warned this is a long post/question !!
I am having a load of medical issues over the past 4-5 years and recently I have been diagnosed with PA. This all came to a head in May this year. But let me start at the beginning.... (I asked and received all my medical notes from the last 6 years from my GP and I have been through them with a fine tooth comb.. Although not medically qualified, I know a little of quite a lot!!)
In June 2011 I had some blood tests done, and although I didnt have a B12 Serum test, 2 indicators that say I may have an issue with B12... Nothing was done.
Slowly but surely, my symptoms began to mount up particularly memory, co-ordination, concentration, easily distracted, speech, lethargy mood swings bad skin, nails (ridges, breaking weak) and hair (breaking and falling out). Then in November 2013 I had an event that was symptomatic of a TIA slurred speech, when swallowing it almost felt like the side on my throat collapsing, unable to formulate words, incoherent, massively bad headache, though no physical evidence was found via MRI or CT scan. My Husband was beside himself as was I as my Father had a catastrophic Stroke in 2006 and I nursed him till he died of cancer 14 months later. I saw a Stroke Consultant who said it was improbable I had a stroke but as a prophylactic measure he prescribed daily low dose aspirin.
Roll forward to May 2014 and symptoms still mounting up or increasing with ferocity, my Husband was concerned especially memory mental foggyness concentration lethargy and odd numbness at the back of my arms. I lost my job due to my really bad memory. I called and saw my GP the same day, I sat in his office and said basically I was leaving until he helped me. I had a blood test that revealed a B12 count of 126 and hypothyroid was at 5.9 as opposed to the count in 2011 of 2.1. Without explanation of what it meant, other than it was PA, I was booked in for B12 injections loading course, with the nurse the day after and as I failed one question on a memory test I was referred to the Memory clinic in the department of Elderly Care (My Hubby thought this was quite funny, being as I am 41!) As always I looked to the net to read up on PA. I wanted facts so I stuck to medical and science entries not FB groups etc, and what I found was all relevant, even down to the "Stroke" symptoms.
BUT I still attended the Memory Clinic.. The Consultant started by saying he looked at my MRI results and said I DID indeed have a stroke!! I was completely flabbergasted!! I was not prepared for this at all. I was just there to do a memory test. I tried to counter him by saying medical evidence show this could be down to PA and he said no, and I shouldn't be reading from Google searches. I am not one to be pushed over and replied saying it was a article I had read and showed him the print out. He didnt even look.
I was referred back to my Stroke Consultant who was surprised to see me but concurred that I may be quite right. I left happy with that appointment.
I was also referred to a cardiologist for 24 monitoring, which resulted in nothing significant found and now I am due to have a camera down my throat so they can check my heart!
All this and my symptoms are getting worse again and if I was honest they didn't truly disappear after the loading doses.
Which brings me to yesterday when I called the GP to ask for a B12 injection to help. I know Im not due one until September but I cant wait that long considering the degradation of my symptoms. I intended to to recite the NICE guidelines at him which indicates that if one is still symptomatic, one should have a top up. I have also learnt that after the loading dose a blood test should have been done to indicate current levels...I got a call back from t he practice nurse who said no. I have to see my GP for it to be prescribed and that too much B12 would cause bleeding to the back of my eye!!!!!!!
OMG is this true??? I cannot find any evidence to back this up!? Do I need to do anything to increase my chances or securing an additional dose. I am more than happy to self medicate, do I / can I get a private prescription??
I still feel like I am in no-mans land with this all!!!