I was diagnosed with pernicious anaemia in 2005, but because my B12 level was "high" (according to the doc) back in 2012 or sometime around then, they removed the 3 monthly injections from my treatment plan.
Ever since, my health has been on a gradual decline but we've never attributed it to pernicious anaemia because I've been diagnosed with so many other conditions since I first fell ill in 2006.
(I collapsed, went to bed to recover from what I thought was Christmas shopping exhaustion, woke up and couldn't walk or talk. Went into EAU at Stafford because they suspected a stroke and my health has been on a gradual decline ever since.)
Other confirmed diagnoses:
Degenerative Disc Disease (cervical and lumbar)
Myalgic Encephalopathy (ME/CFS)
Originally thought to have Meniere's Disease but they said my symptoms were "too bad to be MD"
(now realised they're probably just normal Pernicious Anaemia symptoms - Severe tinnitus (never stops, EVER) severe vertigo (can't even LOOK left to right without going dizzy - and can't watch fast moving pictures on tv/pc and absolutely cannot lie flat, anything less than a 45 degree angle I end up violently sick. Was later diagnosed with Vestibular Migraines, but that would only explain the severe occasional attacks (severe because I can do nothing but sleep it off) not the constant severity of symptoms))
Nerves to/from bladder are either severely damaged or dead altogether - catheterised permanently (suffered retention AND incontinence - my bladder could not tell my brain when it was full, and my brain could not tell it to empty - diagnosed after a course of urodynamic testing at New Cross (they filled my bladder to 800ml before they decided it was counterproductive to try and fill it any more))
Nerves to my back passage are also severely damaged or dead, now have a colostomy for "quality of life".
I THINK I remembered all diagnoses, but memory loss is big and severe for me so I could very well have forgotten something big and flipping obvious - sorry.
I had a seizure today, and it has taken me no less than 6 hours to regain the use of my right side (it was completely dead from the seizure until 6 hours later) the seizure was one of my worst, my better half said I was struggling to breathe, kept stopping breathing, could not respond to him (I normally can) and it lasted longer than usual by minutes. (he didn't literally time it) It was also the worst state after the seizure, I have had numb extremities before, but never my entire right side of my body
including the side of my face.
I refused an ambulance because I was pretty sure it wasn't a stroke, even though others had their doubts, I felt mentally completely normal. He has told me if I have another seizure in next 24 hours HE will order an ambulance and I'll have no choice in the matter.
I am here as a non-paying member to start with, if I feel that it is worth spending my pennies that I have few of, I will donate to be a silver member (Ie if I need to refer to the whole forum, or the documentation)
I look forward to meeting you all.
Oh, I should add I FINALLY (been waiting 2 week for appointment after doc suggested bloods) have my blood tests tomorrow morning, we hope to ask for my B12 level over the last few years if it's easy to check so that we have something to refer to if it's obviously low by your standards not the NHS.
(When my Doc said my B12 was just above what it should be 2 weeks ago, he didn't tell me how much/little he considered what it should be)
My other half found your site this afternoon (I'm already a member of HealthUnlocked) when he was worried sick googling about pernicious anaemia (we have always blamed the seizures on B12 levels, which is why I was having bloods done - I've been having regular almost daily seizures for about 2-3 weeks now but none of them have been as bad as today)
My consultants have never understood why my doc suddenly decided my levels were too high, considering Pernicious Anaemia never goes away. BUT they have never queried it with my doctors surgery.
Anyway, again, I look forward to meeting you all.