Tag Archives: pernicious anaemia

….and so it goes – on and on and….

The pernicious anaemia (treated for now) doesn’t seem to be the end of my medical drama.  It turns out there are some complications relating to why I’m experiencing L’hermittes sign that the doctors are still a bit clueless about.  Personally, I reckon it’s cervical spondolysis now.  However, without having a degree in medicine it seems my extensive research into what could possibly be wrong with me (apart from the obvious stress of being in constant pain and having no answers as to why) is wasted within the surgery walls.  Where only the the ‘qualified’ Google searches leading to Wikipedia’s (accurate by the way) suggestions count!

I honestly believe doctors really ought to listen more to the person actually experiencing the symptoms!  For instance I have been told from Day One that the cracking in my neck is insignificant and down to stress (we’re all bloody stressed – cop-out excuse!) so even I have ignored it, leaving it out of my research into the list of symptoms I have.  As it’s been getting worse however, and following my last appointment where the doc said he was absolutely sure it was nothing to do with my ‘condition’ whatever the hell it is, I decided to ignore ‘he whose words we all seem to take as gospel’ and really look at other possibilities.  I literally typed into Google (<3 ) the words ‘L’hermittes’ and ‘cracking neck’ (cracking neck?? Good thing I didn’t have to type in ‘cracking legs’ or similar – would have got entirely different search results!).  Anywho, I digress.  The first result that came up related to Cervical Spondolysis and my symptoms fit exactly!  Great news!! THIS is fixable!!  Well not entirely curable BUT, you can have surgery to ease the pain and then just maintain a series of exercises at home to maintain flexibility and range of movement.  Somebody please tell me that’s what I have already!  It’s better than thinking that the whole time the docs are ‘investigating’ my spinal cord is being damaged beyond repair….am I right or am I right?  Jeez!

Anyway, negative rant out of the way I am actually REALLY pleased that the Pernicious Anaemia is under control and my energy levels are UP!  It’s fantastic.  For years I’ve been exhausted.  Certainly this past year.  Giving everything I have to the last drop at work, plus the additional tiresome behaviour of pretending I’m ok.  Knackering in itself!  Then there’s the late nights.  Basically coming home and dropping off within half an hour and STILL finding it hard to get out of bed in the morning to do it all over again!  Then finally having to find energy to give my kids on the weekends.

I even had a reputation for falling asleep ten minutes into a movie or having half a glass of wine and passing out.

Turns out I wasn’t drunk OR allergic to alcohol.  Phew!   These days I’ll happily watch TWO – that’s right, TWO films, in a row!  WITH wine!  Amazing!  I’m also much happier in general.  This is huge!  Patience and overall laid-back-ness are  also on the up.  This is the good, no GREAT, news.

 

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Lhermitte’s sign (aka Pernicious Anaemia – part three)

Lhermitte’s sign is a phenomenon classically associated with Multiple Sclerosis although it is actually a symptom of various other conditions.  One of these being…guess what?….B12 deficiency!

Ok so that was that mystery solved but now what?  Well, I’m currently waiting for an appointment for a MRI scan.  This will establish if and where any damage has been caused.  To either my brain or the spinal cord.

YouTube – MRI Scan – what happens

It’s fair to say I’m a little nervous.  Having read sooooo much (maybe a little too much) I am well aware of the possible outcomes.  Worst case scenario?  Irreversible damage to either.  I’ve read about SACD, subacute combined degeneration, which basically means life will never be the same.  At the age of 34 this is kinda scary. I still consider myself quite young and have a huge amount of things left on my ‘to do ‘ list.

However, I have read that damage, if caught early enough, may be partially or even fully reversible.  So I’m staying positive with that in mind.  It’s a bit of a relief to have been able to eliminate some things straight away such as spinal cord compression due to passing tests for things like hyperreflexia.

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Pernicious Anaemia (part 1 of…who knows!)

I have recently been diagnosed with Pernicious Anaemia.  When I say recent ,  I mean 2 weeks ago.  It still feels strange to say it.  Feels weird to recognise that I have a condition that will never go away and requires lifelong treatment.  I never imagined such a thing affecting me and, as many others admit when diagnosed with anything serious…I thought things like this happened to other people. 

So as it’s a fairly recent diagnosis I’ve had my head buried in books and my fingers flying over the keyboard doing extensive and in-depth research.  Some pages I don’t want to read…I come back to them later when I’m feeling a bit more positive.  I think I’m a bit sick of reading now. I’m not finding what I’m looking for. There are no articles or papers on the subject that say ‘but don’t worry, you’ll be fine’.  Thats what I want to hear.  Even though I don’t believe it….yet.

I’m finding the nomenclature a difficult one to explain to friends and family.  It seems when people hear the word ‘anaemia‘ they throw random (slightly ignorant to be fair, but through no fault of theirs!) comments at me like, ‘oh so you just need iron tablets, you’ll be right as rain’ or ‘you want to get some steak/spinach/raw liver (!!) down you, that’ll sort it’. 

The first thing I try to explain when telling someone what I’m dealing with here is that Pernicious Anaemia (PA) is NOT the same thing as iron-deficiency anaemia.  Its entirely different in fact.  PA occurs not through lack of iron or haemoglobin, but as a result of Vitamin B12 deficiency.   

See? It's large and complex!

This is no ordinary vitamin. It’s the largest and most complex of all the B vitamins and is absolutely essential for life.  It is essential for the production of red blood cells, DNA synthesis and the functioning of the brain and nervous system.  It’s actually necessary for the metabolism of EVERY cell in the body.  Without it you die, so, lucky I didn’t find this out some 50+ years ago before some clever people figured out how to inject the stuff straight into your system!  So why can’t I just eat a healthy diet of vitamin B12-rich foods, or take supplements? 

There are different ways to develop PA.  One route is by a B12 deficient diet.  So…great!  Eat as much meat, eggs, dairy – great dietary sources of B12, as you can get your hands on.  Or get down to the local health food store and buy bucketloads of supplements to throw down your neck.  It’s fine, you can’t possibly overdose on the stuff, any excess is simply excreted in the normal way.  So thats that sorted. What about the other kind?  The kind I’ve been diagnosed with.

The ‘other’ kind is a bit more complicated.  The other kind is B12 deficiency that, no matter how much meat, eggs and dairy I eat and no matter how many supplements I knock back, cannot be cured this way.  The reason being that my body will not accept B12 via the normal route.   As I mentioned earlier B12 is a large vitamin and in order to be absorbed into the body it needs to form a complex with a substance called Intrinsic Factor.  This is secreted by the Gastric Parietal Cells (GPC’s) lining the gut, under normal circumstances.  With the kind of PA I have however, the GPC’s are unable to secrete the Intrinsic Factor as they are under attack from my own antibodies.  My PA is an autoimmune disease.  I already suffer from another autoimmune condition which is vitiligo.  This is where my antibodies attack the cells which provide melanin in my skin resulting in white patches that will never colour by way of a suntan.  However this doesn’t affect my health – it just requires a very high sun block factor when out in the sun!

My antibodies attacking my GPC‘s though?  Thats a problem.  The term ‘pernicious‘ actually means ‘fatal’ or ‘deadly’ for a reason.  It used to be!  Luckily, treatment is as simple as injecting B12 directly into a muscle (e.g. upper arm, thigh) a couple of times a week or a couple of months until levels are acceptable and then maintaining these levels with 3 monthly top-ups.  Thats the good news…

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