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!


5 thoughts on “Still searching

  1. lyuba

    Hi Jak,
    I am very sorry to hear about your dad. I know how hard it is trying to get anything conclusive that makes actual sense with those so called specialists. If I were you I would request that ALL biopsies were stained for mast cells. The more I learn about them, the more I realise how often the inflammations caused by them are undetected. My personal view is that in some predisposed individuals they are a lot more susceptible to give either systemic, chronic or acute reaction. As you know I believe I have MCAS, my son’s test proved that he has it and my daughter’s results should be ready soon. I have no doubt that we all have it and so do other members of my family. The symptoms are very different and only by analysing everything to the death could I identify the cause of so many seemingly unconnected symptoms. Like Dr Afrin estimates, there might be 15% of people affected by this and I think he is right. There are many papers that implicate mast cells in severe and even deadly inflammations. It’s just the people that wrote them haven’t heard of MCAS yet. 20 years ago in Manchester one clever doctor was convinced that in many cases of acute pancreatitis ( which often can be deadly) the cause is mast cells degranulation and that if it was recognised, many lives could be saved. The clever lady is now retired and I am sure nobody has bothered to read her ingenious works. It will be lost in the depths of the internet forever now.
    What I am trying to say is that you have likely inherited your ”unstable” mast cells from your parents. Just because they didn’t have your symptoms until now doesn’t mean they don’t have it. It is quite possible that the infection your father had has affected the immune system and triggered the mast cells. If they are going to biopsy anything, insist on mast cell staining just in case.
    I have now been reading up on Gulf War syndrome. This came about after listening to Dr Myhill and how she fights the NHS to stop the abuse of chronic fatigue syndrome patients with their ridiculous treatments of CBT etc. which came about after a bunch of psychiatrists decided that it must be a psychiatric illness. These people, or at least some of them, also believed that the Gulf War syndrome was a psychiatric condition because the one thing those affected ad incommon is that they all new someone else who also had it! How idiotic is that! A soldier knows another soldier. ..A quarter of Gulf war soldiers were affected by this syndrome! Anyway, now better specialists are saying that it is most likely due to all the chemical exposure, vaccinations etc that their immune system went haywire. And strangely all of their symptoms are consistent with MCAS. I bet nobody had even considered this fact or checked their metabolite levels.
    As you know many people can point to an event that has triggered their MCAS symptoms. They attribute their symptoms to often an attack of some sort on their immune system. This is at least a possibility that your father is suffering from it too.
    I better stop now. My finger will be going into a spasm typing all of this on a tiny phone screen.
    All the best to everybody!

    Liked by 1 person

  2. Livvy

    My heart goes out to you all Jak, what an absolute shambles to put it mildly..difficult even to imagine if you weren’t there fighting for it all to happen.. heartbreaking… 😔.


    1. Jak Post author

      Yep, we all feel a bit like we’re banging our heads against a wall – it’s the having to wait months for every little thing which is beyond reason 😦 x


    1. Jak Post author

      Thanks Ellie. My Mum actually had excellent treatment for the Gullaine Barre – five days of IV immunoglobulins and I’m sure the quick treatment helped her to walk again (if still very badly due to nerve damage).

      The Neuro did say that if Mr Miller (the head honcho) agrees we can try steroids, but of course there are risks (eg stomach bleeds and my Dad already has stomach problems) and they’ll only give them if inflammation is definitely found – hence the nerve biopsy to check.

      It’s really frustrating, but in order to give the correct treatment they have to know what they’re treating, and as yet we don’t :-/ x



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