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:
- 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.