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.
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.
Well, about 6 weeks before my Pernicious Anaemia diagnosis, I started experiencing numbness and tingling, like pins and needles but not quite that, in my finger tips. As it was only in my left hand initially I (stupidly!) put this down to excessive guitar playing. That’s really quite terrible terminology because as any musician knows there is, of course, No Such Thing as ‘excessive’ guitar playing! Pfft!
Anywho… despite finding it really strange I actually just ignored it for a couple of weeks. Until it spread to my other hand. Actually, I would have probably ignored this too if it hadn’t been for the horrendous neck and back ‘clicking’ that I’d been experiencing for a number of months as well as the interference with guitar practice. Now, I don’t go rushing off to the doc’s for the slightest ache and pain (childbirth with no pain relief gives me a pretty high threshold for deciding whats painful and whats not!) but when there are multiple symptoms cropping up then I want to know what’s going on!
I went to my (excellent by the way – I’m very fortunate!) doctor and explained my concerns. The excessive tiredness alone is what he seemed to be most concerned about. He booked me in with the nurse to have my blood tested for, well just about everything. I used to work in Immunology within the Pathology department of NHS hospitals and occasionally spent time in Haematology and Biochemistry too so I was satisfied that this was a thorough list of testing! However he spotted my expression and asked if there was anything else concerning me. So I said ‘well, yes. You haven’t mentioned the tingling in my hands’ (which was after all why I was there!). However he didn’t seem concerned at all and said we’d look into that following my blood test results. So, fine! Who am I to argue? I went away a lot less worried and just got on with work.
Work was turning into a nightmare by the way. I work as a Laboratory Manager (immunological and genetic analysis – I won’t bore you) but it’s a very hands on role. Y’know, pipetting and stuff. My confidence started to ebb away very quickly over a period of about 6 weeks, probably from around the same time as the tingling started. This was down to a combination of things but mostly: forgetting simple names or jobs due out, making errors due to inability to concentration (I HATE making mistakes), and clumsiness. I was desperately trying to hide all of these symptoms, putting it down to tiredness but secretly questioning what on earth was wrong with me?
So a few days after my blood tests the results are in and, as you may have already seen (in Pernicious Anaemia – part 1… ahem!) I had low B12 and following further tests Autoimmune PA was diagnosed. This did not explain the tingling however and I was once again sent home to see if it would just disappear. It didn’t. It got worse, much worse.
The tingling spread to my upper arms and back and by now was really concerning me, particularly as my back was affected and this was clearly something to do with my nerves. You don’t spend 4 yrs on a Biomedical Science degree without learning a thing or three about the Central Nervous System!
So I went back to the doctor. Actually I was sent there by my colleague JT in the middle of the work day as the strange sensation had me in tears and he was very worried. I made an emergency appointment and went into the surgery (still crying!) telling my doctor something was just not right. He checked me over with Babinski’s test - which I passed and then….get this….went on Wikipedia (I love Wiki!) to try and work out why I was having this strange symptom which to him could only have been one thing. There it was in black and white, the Lhermitte’s sign that he thought I was describing was also associated with B12 deficiency! News to both of us!
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.
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…