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!