Tag Archives: smouldering myeloma

No Coincidences

As most of my regular readers will know, in the last 18 months my Dad has gone from going mountain climbing every week to being in a wheelchair.  In the last 6 months he’s also started having hand spasticity and awful vertigo/vomiting episodes and is clearly not well.

A routine blood test a year ago discovered an IgA kappa paraprotein band in his blood.  This can be a sign of either Multiple Myloma (a blood cancer), Smouldering Myeloma (a precursor to Multiple Myeloma) or MGUS (a warning sign for Myeloma which requires monitoring but no treatment).  As the rest of my Dad’s blood work was fine, he was classed as having MGUS despite having no further tests.  IMHO he should really have been referred to Haematology for a bone marrow biopsy to check for Smouldering Myeloma due to his symptoms of dizziness, vomiting, fatigue and nerve issues but wasn’t, a situation I’ve been unhappy about for some time.

An MRI scan in the Spring showed he had stenosis (ie narrowing) in his spinal canal due to bulging discs and he was referred to the Surgeons at Newcastle.  We waited, and waited and waited and eventually 7 months later he saw the Surgeon, who booked him in for surgery on New Year’s Eve but said that his severe symptoms couldn’t be accounted for by the stenosis (which I had been telling every doctor we’ve seen all year!) and referred him for further tests.

So this week he had another MRI scan and nerve conduction tests on his legs, which showed he had something called C.I.D.P. (Chronic Inflammatory Demylinating Polyneuropathy).  His immune system is basically eating the myelin sheath around his nerves 😦  His surgery was cancelled as the Surgeon said his symptoms were basically all coming from the CIDP, which can be associated with kappa paraproteins in the blood – no shit Sherlock.

CIDP used to be called Chronic Guillain Barre Syndrome.  GBS is a rare autoimmune disease where, often after an infection, the immune system starts attacking the nervous system.  And that’s where the weirdness starts.  My Mum developed acute Guillain Barre Syndrome last August.  My Dad had a slight cold which he fought off no problem.  He passed it to my Mum who, with severe heart and lung disease, became very ill indeed and was eventually diagnosed with Guillain Barre and rushed to hospital.  But it was after this that the kappa paraprotein was found in my Dad’s blood and he started having problems walking.

Guillain Barre Syndrome is an autoimmune disease.  It is not infectious or contagious.  However both my parents have developed this rare illness after the same bug, the ony difference being my Mum developed acute GBS and my Dad chronic GBS.  No-one is ever going to convince me that this is mere coincidence.

I’m so grateful we finally have a diagnosis for my Dad but I’m tearing my hair out trying to get urgent treatment for him.  The Surgeon washed his hands, saying he needed to see a neurologist.  He saw a neurologist last Monday (before the CIDP diagnosis) who at least referred him to Haemaology to check for Smouldering Myeloma, so I left a message for him to ring me urgently regarding my Dad’s new diagnosis……..four days ago and he hasn’t returned my call.  I rang his GP at 8.30am yesterday morning and she did ring me back saying she’d sort something out………..and she didn’t call me back either.  FFS!  My Dad is getting worse by the day and has been left untreated for nearly 18 months now.  He urgently needs steroids and an IV infusion of gammaglobulins to halt the progression of the CIDP but it’s the week before Xmas and no-one seems to give a shit.  I am so stressed :-/  If I’ve heard nothing from the GP by lunchtime I’ll ring and exert my legal right for him to be treated by whomever I like, and it will be James Miller a neurologist at the RVI in Newcastle who specializes in CIDP and protein neuropathies.  I’ve no idea if he’s the right person to see but one thing’s for sure, there won’t be a CIDP/protein neuropathy specialist at my little local hospital will there?  Wish me luck.

 

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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.