Tag Archives: dizziness

MGUS and the need to listen

Before I begin this post, I just want to give a shout out to a new blog on M.E. called ‘Words from a Hidden World’.  The blog is written by Naomi Whittingham who has suffered the tortures of hell, aka severe M.E., for decades.  I don’t know Naomi personally, but we have several friends in common and I’ve read many of her stunningly well written articles in the press and elsewhere over the years.  Despite huge cost to her health Naomi has tirelessly tried to educate on the realities of severe M.E., as this post relaying a talk she gave to Doctors and Clinicians demonstrates, and my blog post today was inspired by Naomi’s advice on how important it is for Doctors to listen to their patients.  I hope you’ll pay her brand new blog a visit – scroll right down to the bottom of the page to subscribe.


On to the topic of today’s blog post: the importance of listening and why Doctors appear to be so shit at it.

18 months ago my Dad had some routine blood tests and something called a kappa paratrotein band was detected that shouldn’t be there.  I’d never heard of kappa paratroteins so did some digging on Google and discovered they are implicated in three diseases: MGUS (monoclonal gammopathy of undetermined significance), SM (Smouldering Myeloma) and MM (Multiple Myeloma).

MGUS is rare but not massively uncommon, especially in older men.  There are usually no symptoms and the patient happily lives with the condition.  However, it does have to be monitored because between 1-3% of patients with MGUS each year go on to develop either Smouldering Myeloma or Multiple Myeloma, ie blood cancer.  If you go on the myeloma forums online, nearly everyone with MGUS is referred to a Haematologist to be checked for myeloma and if they are clear they can be monitored every 3-6 months by their GP.  Only my Dad has never seen a Haematologist or been checked for myeloma :-/

At around the same time as the MGUS was detected my previously fit and healthy Dad started having back and leg problems and to cut a very long story short 18 months later is now using a wheelchair because he can barely walk.  He had an MRI on his lower spine which showed stenosis and he’s currently waiting for surgery on his back.  However, he’s been having other issues like bilateral spasticity in his hands and horrendous vertigo and vomiting episodes which were initially a couple of months apart and are now a couple of weeks apart.  Having read about myeloma, four of the symptoms are:

  • Dizziness
  • Vomiting
  • Fatigue
  • Leg weakness/Neuropathy

and my Dad has all four.  I’ve repeatedly asked his GP if his MGUS could be the cause but she’s poo poohd the idea, saying his hand spasticity was just cramp, his vertigo and vomiting is migraine (despite my Dad being 79 and never having so much as a headache in his life before let alone a propensity to migraines) and his leg weakness is all coming from his back problem.  But I just knew in my heart that the MGUS was involved.  No-one was listening to me though.

In November my Dad was finally seen by the Surgeon who will perform his back surgery and he immediately said that my Dad’s stenosis wasn’t bad enough for my Dad to be so ill he was in a wheelchair.  He strongly suspects neuropathy………caused by the MGUS.  Up to 30% of patients with paraproteins in the blood develop neuropathy because it de-myelates the nerves.  So he’s ordered nerve conduction tests which my Dad is having on Monday.

The other thing paraproteins can do is cause bony growths, particularly on the spine, so the surgeon has also ordered an upper MRI scan of my Dad’s back to see if such a growth (ie lesion) has occurred and may be pressing on nerves leading to his head and causing the vomiting episodes.

Here’s the thing though.  If the MGUS has, over 18 months, caused neuropathy it is irreversible and my Dad will be in a wheelchair for the rest of his life.  But if the GP had listened to me and taken the MGUS into account sooner my Dad could have started on drugs which may have helped and he might not be in the state he’s in now.   And even if the GP didn’t want to listen to me my Dad should have been referred for a bone marrow biopsy to make sure he didn’t have Smouldering Myeloma. To say I’m livid is the understatement of the century.

Why do Doctors become so blinkered?  Why don’t they listen to clearly intelligent, well informed patients who know themselves and their loved ones so much better than anyone else on the planet?  Many of my Dad’s symptoms didn’t fit the stenosis diagnosis but his GP refused to consider there might be something else wrong, even in the face of blood tests which clearly showed he is at risk of myeloma and his symptoms actually fitted a myeloma diagnosis.  I swear if he does have cancer I’ll sodding well sue the GP.  Unluckily for her I wrote her a letter in April outlining my concerns about his kappa paraprotein level and the symptoms he had, so I have proof that I raised concerns which were ignored.

My poor Dad thinks he’s going to have a back operation and 3 months later will be on his feet and tickety boo.  No-one has the heart to tell him that won’t be the case and he is now probably permanently disabled – I dread to think what that will do to his mental health.  And I’m trying not to lie awake at night wondering how I will manage from now on with both parents in wheelchairs and hardly able to do a thing from themselves when I am also chronically ill and struggle to look after myself let alone two other people.  I’ll keep you posted as to how he gets on.

 

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Weird head symptoms

This is another peri-menopause related post, so feel free to skip it if you’re male, a younger female who doesn’t want to know what the future holds or a jammy older woman who has put menopause hell behind them 😉

I’ve been having a new symptom and it has not been pleasant.  Several months ago, while teaching software to a group of people at my Camera Club, I suddenly felt like I was having a stroke.  I know that sounds dramatic but trust me when I say it was dramatic.  Out of the blue I felt my brain lurch inside my skull and all thoughts ceased.  I couldn’t think, I couldn’t speak and I felt like I was going to pass out.  I have no idea how I kept functioning for the remaining minutes until our coffee break, but I somehow coped then made a hasty retreat to the loo, where I sat on the throne with my head in my hands wondering what the hell was happening.  After five minutes or so I started to shake and feel ridiculously hungry and I realized my blood sugar had tanked, so went and got myself a brew and ate some biscuits.  Later I managed to drive home, albeit feeling crazily spaced out, but for days afterwards I felt really dizzy and disoriented.

Most people would have rung the Doctor but I just figured if it was a stroke I seemed to be recovering and if it wasn’t a stroke they wouldn’t have the foggiest clue what it was, so I couldn’t much see the point.  My almost phobic fear of the medical profession and being labelled bonkers outrode my fear of what was happening to me.

That was back in September and this week it happened again, this time while I was sitting quietly in bed watching the telly.  I genuinely felt like I’d been coshed over the head with a blunt instrument, saw stars and then felt ridiculously woozy for the rest of the night.  For the next four days I kept having weird head rushes, a feeling like my brain was lurching in my skull and felt constantly woozy like I had some kind of concussion.  I also had a low level thumping headache and my brain actually felt sore, a bit like it was bruised.  On day number five, ie this morning, I had some mild head rushes when I first got up but then seemed to brighten up and didn’t start feeling woozy again until around 7pm.  It’s now 8pm and every time I move my eyeballs I feel dizzy – writing this post is making me proper nauseous.

It’s been quite scary if I’m honest, but I did realize that this week I should be ovulating so I’m assuming it’s some kind of hormonal problem.  I Googled “menopause weird head symptoms” and came across dozens of pages, but they were mostly accounts of dizziness rather than the violent brain lurching I’ve experienced, or women who were having anxiety and/or panic attacks which is something I’ve thankfully never suffered from.  From the women’s accounts they were having symptoms which only lasted an hour or two at most,  or symptoms which came and went, not lasting days on end like mine have been this week.  I have had quite bad dizzy spells on and off for a couple of years now but this feels very different – more woozy and with disequilibrium rather than vertigo, plus the head rushes and brutal, sudden feeling like I’ve just been battered on the nonce.

To be honest I’ve no freakin’ clue what’s going on and currently have no intention of finding out.  I’m so sick of Doctors looking at me like I’m nuts, or giving me all sorts of tests which always come back normal then looking at me like I’m nuts, that I’d rather suffer the weird head shit than put myself through the trauma that is medical care.  The symptoms have two choices – they will either go or they won’t and if they don’t and they become unbearable I’ll have to have a rethink.  I’ll probably be offered drugs I can’t take in any event, particularly if they’re migraine related, so I can never much see the point in going to the Doctors.  I’m just hoping it’s my hormones and will settle down soon – keep your fingers crossed for me!

 

Anaemia update

Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time.  I was dizzy, constantly.  I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis.  I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia).  My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.

Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare.  No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.

As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked.  They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90.  My vitamin D was also considered sub-clinically low, ie outside the normal range.  My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.

My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between.  In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10.  So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.

I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D.  According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.

Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste).  Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain.  So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet.  This worked fine and I had no side-effects whatsoever 🙂

Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted.  By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy.  In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!).  One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends.  Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails.  So here’s a couple of pictures of what’s happening for me:


I doubled my dose of Spatone but it didn’t help.  In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different.  I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change.  The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible.  So I’m now trying to find a different liquid iron supplement to take but am so far struggling.  The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.

When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms.  But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E.  In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome.  Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease.  And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.

It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day.  So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.

 

 

 

 

Blood Results

I had to go to the Surgery today to pick up my Famotidine prescription, so while I was at reception I asked if my recent blood results had come back.  They had, so I requested a print-out and there is some great news and some mildly not-as-great news.

The good news:

  • I only have a 1.3% change of having a heart attack or stroke in the next 10 years.  You can do your own QRISK test online here.
  • My inflammatory markers (Serum C reactive protein) are low at <2mg/L (normal is anything under 5mg/L).  Bizarre being as though I have chronic gastritis (an inflammatory stomach disease), MCAD (which causes chronic inflammation) and am permanently injured due to my EDS (injuries cause inflammation).  My C reactive protein levels have always been low, which is great if not a true predictor of what’s actually going on inflammation-wise!
  • Liver normal.
  • Urea and electrolytes normal.
  • Blood sugar is fine.  HbA1c level is 32, which equates to an actual blood sugar level of 5.5% (anything under 48/6.5% is normal).
  • Folate levels are good at 4.7ug/L (anything above 2.5ug/L is normal).
  • B12 levels are good at 378ng/L (normal levels are between 197-771ng/L).  Obviously as a pesco-vegetarian it’s important to monitor B12.
  • Full blood count is normal.

The not as good news:

  • My Vitamin D levels are normal but at the low end of normal.  I live in the northern hemisphere and we’re at the end of winter, so this is to be expected.  I do try to keep my Vit D levels up by eating dairy products daily and getting outside for at least 30 minutes every day of my life with Bertie, but we don’t have much sunshine here in the north of England so it’s easy for Vit D levels to be low.  It’s not something I worry about in any way and I don’t usually feel any worse in winter than I do in summer.
  • I have low iron, which again comes as no surprise and is the reason I went for a blood test in the first place.  My serum ferritin is 18ug/L (normal is 17-291ug/L) and, coupled with my 5 risk factors, I need to see my GP re iron deficiency anaemia.  Sadly I can’t get an appointment with my GP until 22nd March (!) so in the meantime I’ll buy some liquid iron from the supermarket and try that (liquid iron has less iron in it than most of the tablets, so tends not to cause constipation though it does take longer for iron stores to increase).
  • The biggest shock was that my kidney function is lower than it should be for my age at 73 (between the ages of 40 and 59 it should be in the 90s).  A GFR (Glomerular Filtration Rate) of 73 is classed as stage 2 chronic kidney disease, although doesn’t require any treatment.  I would have completely freaked out when I read this if my best mate, who is 8 years younger than me, hadn’t had the exact same result recently.  Her GP said it was nothing to worry about, though you do wonder why we both have reduced kidney function!  My Mum has a GFR of 45 but her GP isn’t bothered and says no treatment is needed, so it seems unless your GFR is 1/3 of normal it’s not something to be concerned about?!

In a way I’m glad my iron has come back low because it explains the symptoms I’ve been having for the past few months and hopefully I can do something about it (makes a change!).  Having been pesco-vegetarian for nearly 30 years this is the first time my ferritin levels have ever been below normal, so it just shows the impact a reduced diet or taking certain medications can have and also the extra burdens placed on our bodies during Menopause.