Tag Archives: neuropathy

Still searching

In 2017 my Dad was walking 6 miles up a mountain every week with his best mate.  He got a bit stiff afterwards but other than that he was in great nick for a man of 77.

In August of 2017 he caught a mild cold.  He passed it to my Mum and by September she was paralysed.  The cold had triggered Guillain Barre Syndrome, an auto-immune disease.  Looking back, however, my Dad was also affected by the cold and started having some leg weakness after his walks, along with chronic fatigue and ever increasing stiffness.

In December 2017 he was concerned enough to see his GP, who did some routine blood work and found a small IgA kappa paraprotein.  Paraproteins can be a precursor to lymphoma, however in the early stages they are classed as MGUS (monoclonal gammopathy of undetermined significance) so he is now regularly monitored.

In January 2018 he first saw the spinal team who ordered an MRI scan of his spine.  They found a narrowing of his spinal cord called spinal stenosis and referred him to the surgeons at the RVI in Newcastle.

We waited 8 months for our first appointment at the RVI, during which time my Dad deteriorated.  In June he had to stop walking the fells with his friend, but could still potter to the local shops and back.  He also started having dizziness & nausea spells, about one every two months.

His GP referred him to the heart unit, who found he had bradycardia (a very slow heart beat) when he slept but apart from that all was fine with his ticker.

His dizziness & nausea episodes increased over the next few months, until he had actual vertigo with prolonged projectile vomiting about every 2-3 weeks.  His hands had also periodically started cramping and going spastic.  His walking ability also continued to decline and by the time we saw the actual Spinal Surgeon in November 2018 I had to take him to the appointment in a wheelchair as he couldn’t walk from the car park to the Clinic.

The Surgeon said the stenosis in his spine was mild and couldn’t possibly be causing the severe weakness in his legs so referred him for an upper MRI scan and some nerve conduction tests.  The MRI was fine but the nerve tests showed severe sensorimotor neuropathy in both legs.

The Surgeon strongly suspected CIDP (chronic inflammatory demylinating polyneuropathy), an inflammatory auto-immune disease which eats away at the myelin sheath around the nerves and can be caused by viruses (like the cold that led to my Mum’s GBS).  He cancelled my Dad’s surgery as he said the nerve issue needed to be sorted first.  However, he didn’t refer us to anyone so we were left floundering alone in the dark.

My Dad was getting worse by the week, so in December I took matters into my own hands.  I found a neurologist at the RVI who specialized in CIDP, pinched his email address from a paper he’d written, and emailed him directly – frowned upon here in the UK!  However, he was very kind and emailed me straight back.  To cut a long story short my Dad was referred to the rapid access neurology unit and seen by a Neurologist on Christmas Eve.

She ordered a lumbar puncture, which showed raised CSF protein.  However, the protein wasn’t indicative of CIDP, so now they had no clue what was causing his severe sensorimotor polyneuropathy.

The Neurologist ordered a CT scan, as raised CSF protein can indicate cancer.  My Dad had this done at the start of February and every 2 weeks since I’ve rung for the results, which have never been available.

It is now April, 7½ weeks since his scan and 18 months since he first started to have problems with his legs.  We are no further forward and were so pissed off with being passed from pillar to post on the NHS and having to waits months and months for every little thing we made an appointment to see a private neurologist next Tuesday.  However, yesterday I decided to have one more go at getting my Dad’s CT results (to take with us to the private appointment) and discovered they were back but hadn’t been seen by the Neurologist yet – fuck knows when that was going to happen.

However, yesterday afternoon the Neurologist’s secretary rang to say that the Neurologist had now seen the CT scan and all was fine.
“So when is our follow up appointment?” I ask.
Secretary:  “Were you expecting a follow up appointment?”
ME:  “Well, being as though 18 months ago my Dad could walk 6 miles up a mountain and is now in a wheelchair, we have no clue what’s wrong with him and he’s receiving no treatment, yes I do think we’d like a follow up appointment!”  FFS!
So she slotted us in today, being as though the Neurologist was about to go on annual leave.  If I hadn’t rung yesterday to chase his CT scan results for the fourth time we’d still have been none the wiser by May!

So today I’ve driven another 180 miles to see the Neurologist, who to be fair is very nice and very thorough.  Here’s where we are:

  • She has no idea how much his spinal stenosis is contributing to his symptoms.  Do we go ahead with surgery nor not?
  • She was concerned my Dad may have arthritis in his hips and/or knees which is contributing to his pain, so we had all of those xrayed while we were there.  No results yet.
  • She has no clue what is causing his severe neuropathy.  30% of people have idiopathic peripheral neuropathy, ie no cause is ever found, however they don’t tend to have quickly progressing PN like my Dad so she thinks there must be an underlying cause.
  • As he also has a dry mouth and dry eyes she’s wondering about Sjogren’s Syndrome (another auto-immune disease which can cause neuropathy), so is referring him to a Rheumatologist.
  • In the meantime, she’s getting a second 2nd opinion from the CIDP specialist, just to check again.  She’s going to ask if it’s worthwhile doing a nerve biopsy to check if inflammation is present once and for all.  If it is, it might still be CIDP (it fits his symptoms more than any other diagnosis). If it isn’t we’re up the shittiest creek in Shitsville without a proverbial paddle.

So it’s yet more waiting, and testing, and waiting for the results – if we don’t all lose the will to live in the meantime!

 

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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.