No Coincidences

As most of my regular readers will know, in the last 18 months my Dad has gone from going mountain climbing every week to being in a wheelchair.  In the last 6 months he’s also started having hand spasticity and awful vertigo/vomiting episodes and is clearly not well.

A routine blood test a year ago discovered an IgA kappa paraprotein band in his blood.  This can be a sign of either Multiple Myloma (a blood cancer), Smouldering Myeloma (a precursor to Multiple Myeloma) or MGUS (a warning sign for Myeloma which requires monitoring but no treatment).  As the rest of my Dad’s blood work was fine, he was classed as having MGUS despite having no further tests.  IMHO he should really have been referred to Haematology for a bone marrow biopsy to check for Smouldering Myeloma due to his symptoms of dizziness, vomiting, fatigue and nerve issues but wasn’t, a situation I’ve been unhappy about for some time.

An MRI scan in the Spring showed he had stenosis (ie narrowing) in his spinal canal due to bulging discs and he was referred to the Surgeons at Newcastle.  We waited, and waited and waited and eventually 7 months later he saw the Surgeon, who booked him in for surgery on New Year’s Eve but said that his severe symptoms couldn’t be accounted for by the stenosis (which I had been telling every doctor we’ve seen all year!) and referred him for further tests.

So this week he had another MRI scan and nerve conduction tests on his legs, which showed he had something called C.I.D.P. (Chronic Inflammatory Demylinating Polyneuropathy).  His immune system is basically eating the myelin sheath around his nerves 😦  His surgery was cancelled as the Surgeon said his symptoms were basically all coming from the CIDP, which can be associated with kappa paraproteins in the blood – no shit Sherlock.

CIDP used to be called Chronic Guillain Barre Syndrome.  GBS is a rare autoimmune disease where, often after an infection, the immune system starts attacking the nervous system.  And that’s where the weirdness starts.  My Mum developed acute Guillain Barre Syndrome last August.  My Dad had a slight cold which he fought off no problem.  He passed it to my Mum who, with severe heart and lung disease, became very ill indeed and was eventually diagnosed with Guillain Barre and rushed to hospital.  But it was after this that the kappa paraprotein was found in my Dad’s blood and he started having problems walking.

Guillain Barre Syndrome is an autoimmune disease.  It is not infectious or contagious.  However both my parents have developed this rare illness after the same bug, the ony difference being my Mum developed acute GBS and my Dad chronic GBS.  No-one is ever going to convince me that this is mere coincidence.

I’m so grateful we finally have a diagnosis for my Dad but I’m tearing my hair out trying to get urgent treatment for him.  The Surgeon washed his hands, saying he needed to see a neurologist.  He saw a neurologist last Monday (before the CIDP diagnosis) who at least referred him to Haemaology to check for Smouldering Myeloma, so I left a message for him to ring me urgently regarding my Dad’s new diagnosis……..four days ago and he hasn’t returned my call.  I rang his GP at 8.30am yesterday morning and she did ring me back saying she’d sort something out………..and she didn’t call me back either.  FFS!  My Dad is getting worse by the day and has been left untreated for nearly 18 months now.  He urgently needs steroids and an IV infusion of gammaglobulins to halt the progression of the CIDP but it’s the week before Xmas and no-one seems to give a shit.  I am so stressed :-/  If I’ve heard nothing from the GP by lunchtime I’ll ring and exert my legal right for him to be treated by whomever I like, and it will be James Miller a neurologist at the RVI in Newcastle who specializes in CIDP and protein neuropathies.  I’ve no idea if he’s the right person to see but one thing’s for sure, there won’t be a CIDP/protein neuropathy specialist at my little local hospital will there?  Wish me luck.

 

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5 thoughts on “No Coincidences

  1. Jan Groh

    Sorry to hear of your dad’s rapidly declining health. That is quite a coincidence about both of them having signs of Guillain Barre, whatever form. Hmm… no, technically autoimmune disease isn’t contagious, but maybe the triggering viruses are… Best of luck to you all, getting through the holidays.

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    1. Jak Post author

      Thanks Jan. That a slight cold would trigger GBS in both my parents seems odd in the extreme to me, especially when GBS is usually seen in young people and both my parents are nearly 80!

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  2. Livvy Woodburn

    Dear Jak, I’m so sorry to read that no one is helping you with your Dads health care needs and how you’ve had to fight to get the proper diagnosis for him. You must be so frustrated. I just wanted to mention that although I haven’t seen the neurologist you mentioned, I do know a friend who sees him for her MG and recommended him. Hope you manage to get something sorted for soon.

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    1. Jak Post author

      That’s very reassuring Livvy, thank you! I ignored all protocol and emailed him directly yesterday morning. He replied within an hour and is happy to see my Dad but can’t until 17th Jan. So he’s asked to see a timeline of my dad’s symptom progression which I sent late last night and will decide whether he can wait til then or whether he needs referral to the emergency neuro clinic. Most neurologists are shit to deal with as they have massive egos, but Dr Miller has been very helpful and understanding of our situation x

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