Tag Archives: peripheral 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!


Dysautonomia Appointment

Newcastle-upon-Tyne has a leading ME/CFS Research centre (see their Facebook page) based in the Biomedical Research Building at the site of the former Newcastle General Hospital, now the Campus for Aging & Vitality.  The Research is headed by Professor Newton, who specializes in fatigue (see their fatigue research website here) and the autonomic nervous system in particular Postural Orthostatic Tachycardia Syndrome (known as POTS).

During my early years of M.E., when I was severely affected, I had huge problems with Orthostatic Intolerance, ie. an ability to sit or stand upright without feeling dizzy, ill or fainting.  Thankfully as my M.E. has improved, and in particular the past 2 years as I’ve been able to start walking again, my ability to remain upright without wanting to pass out has improved substantially, at least in the early part of the day although I tend to go downhill mid-afternoon.

However, I’ve developed new problems with my heart beating irregularly particularly after eating and when changing from sitting to lying down, and due to my age, my long years of inactivity, and the fact that Ehlers-Danlos can cause heart issues this needed to be investigated.  I feel like my heart skips a beat, then I get a strong pounding beat, which causes the veins in my head to throb!  It’s quite unpleasant, even though I’m sure it’s nothing much to worry about.

Since contracting meningitis in 1996 I’ve also had constant, painful, pins & needles in my hands and the soles of my feet which I suspect may be peripheral neuropathy.  The sensation doesn’t come and go, but does have days where it’s more intense than others.  No-one has ever explained what this is and any doctors I’ve mentioned it to have just looked blankly at me and moved swiftly on!

So my appointment at the POTS clinic today was to address my heart rhythm abnormality, my pins & needles, and to assess whether I still have POTS or OI.

I had a short ECG done, which measures electrical activity in the heart.  This was normal (it always is!), but being as though my heart is usually worse after eating and in the evening when I’m relaxing Professor Newton decided that 24 hour (or longer) heart monitoring was needed.  She thinks I’m suffering from Ectopic heartbeats, which are usually benign and nothing to worry about, but we still need to know for sure.  She is referring me to my local hospital to have this done, so I’ll just have to wait for an appointment.

My pulse and blood pressure were measured both lying down for 5 minutes, then standing for 5 minutes.  All was fine and there was no substantial drop in blood pressure or rise in heart rate which would indicate POTS.  I didn’t expect anything to show up because I’m always at my best in a morning (my appointment was at 10am), but get progressively worse as the day wears on (it’s now 3pm and I’m in bed because being upright makes me feel rubbish).  The 24 hour heart monitor also measures blood pressure, so I’m hoping that a more accurate picture of any orthostatic issues will show up on that.  As it was, because my 10 minute test was fine Professor Newton didn’t think there was any need for a tilt table test (the gold standard test used to diagnose POTS).

We discussed my pins & needles and Professor Newton had no idea what the cause was.  So she’s referred me for an Electromyogram and nerve conduction test which measures the electrical activity of muscles.  I’ve heard that this test can be excruciatingly painful, so the thought of having one doesn’t do much for me!  However, I need to know what’s happening with my nervous system so I’ll just have to grit my teeth and get on with it.  Luckily this again can be done at my local hospital.

At the end of the appointment I was asked if I had any questions.  I told her about my chronic low blood pressure, and the fact my diastolic pressure becomes ridiculously low during menstruation which makes me feel absolutely crap.  She said that because I had a very ‘clean’ vegetarian diet and don’t eat processed food I wasn’t getting enough salt and I needed to increase that, but didn’t tell me how or by how much.  I was also told to drink 2 litres of water a day, which just made me laugh – the combination of permanent piddling due to my MCAD and the stretchy bladder of my EDS would make drinking that much water impossible without being permanently glued to my loo!  I just nodded politely and thought “dream on ” to myself, even though I know the advice was correct.

I’m not entirely sure what I thought today’s appointment would be like, but it was nothing like I’d imagined.  She’d read the notes sent by my GP and Consultant, but asked me nothing about my illness history or really anything about my symptoms, which I found quite odd.  And I did think it would take more than a 10 minute blood pressure reading to determine if I had some kind of dysautonomia!  But she’s the expert, so you have to trust her judgement.  The appointment must have lasted a massive 8 minutes from start to finish and I felt rushed, which made me feel flustered.  I thought at least I might get to talk to her about my EDS and MCAD, and how I feel these tie in to my M.E., but there was zero opportunity or time.  Worth travelling 180 miles for?  Time will tell.  At least all the staff, including Professor Newton, were really nice (well, apart from the receptionist who looked like her face would crack if she smiled) which trust me when I say is unusual because over the years I’ve met more stony faced, miserable, disinterested and arrogant medical staff than you can shake a stick at 😉

I’ll keep you posted on the tests as and when I hear anything.