Don’t Ask

by Tony Greenfield

Don’t ask an old man how he is. He might tell you.

You haven’t asked but I shall tell you anyway because I am old and I feel awful. So here’s my rant.

I retired long ago – I was a professor of medical statistics – but have kept in touch with the medical profession by becoming a patient.

It started about ten years ago with pins and needles in hands and feet. My GP gave me some ointment that had a nice smell and was cooling.  He referred me to a rheumatologist who was pretty and chatty. She offered no help other than coffee with biscuit, another date and a referral to a haematologist who found NAD.  A series of neurologists pricked me, said I was losing sensitivity (I knew that) but conductivity tests showed NAD.

Pins and needles progressed to pains in hands, wrists, feet and ankles.  I met a PhD student who was researching corneal nerve fibres using confocal microscopy.  Fascinated, I helped her with statistical analysis and presentation and I wrote a program to compute nerve tortuosity.   She said these were the same small fibres that occur in the hands and feet; since they were small and unmyelinated fibres, conductivity tests may not reveal any defects.  She accepted my advice that she should check that hypothesis.  She chopped a sample from my foot and, sure enough, she seemed to be right.   More patients kindly agreed to participate in this correlation test. I was really happy that my discomfort contributed to her PhD.

There were fewer small fibres than expected;   they were straighter, less branched and less tortuous.  Something was destroying them.  A bug?  NAD.  A neurologist in a different hospital and a different city, suggested auto-immunity.  Tests revealed a high level of gliadin antibodies.  Gliadin?   It is a protein in gluten, the stuff in barley, rye and wheat that glues flour together in bread, pasta and pastry.

“You must not eat gluten”, he said.

I declined bread rolls with my soup and lost a stone in weight.  I felt much better though the pains got worse.

A gastroscope revealed no damaged villi so I don’t have coeliac disease.  Public perception insists that I do when I ask for gluten free food so I pretend I do.

I love porridge and have eaten it most mornings of my life.  But makers of porridge oats admit that, since they use the same machinery for harvesting, transporting, rolling and storage as they use for barley, rye and wheat, the oats is contaminated with gluten.  So I searched for gluten free oats.

Jill Adron farms near Aberdeen.  Her husband has rheumatoid arthritis and the cause was said to be autoimmunity by gliadin antibodies.  Much exploration led her to a farmer in Sweden who grew certified gluten free oats. She bought some seed, sowed it, and now has a thriving gluten free foods business.  I am a regular customer.

Serum antibodies are measured with ELISA.   After three years, Elisa had shown my gliadin antibodies descend almost to the bottom of the hyper-level.  Then Elisa moved to the immunology department in a neighbouring hospital.  The immunologist was vague and unhelpful in his reporting.  He said his measurement put my value in the equivocal range.  He couldn’t tell me how the equivocal limits had been established.  But, he told me; his opinion was that gliadin antibody measurements had no diagnostic value.

“Diagnostic for what?”  I asked.

“Coeliac,” he said.  I hadn’t mentioned coeliac, nor had the neurologist.  We had just asked the score.

“In any case,” he added, “there is too much variation for it to be useful”.

“I make my living out of variation,” I told him.  “So perhaps we could do some useful research”.

“It’s no use for research if there’s variation,” he asserted.

I was tempted to ask if he had always been a prat, or only since he’d studied medicine.

The peripheral neuropathic pains persist and I have grown to live with them. I make excellent gluten free bread and cakes.

One day, my GP commented: “You’re shuffling.  Write something for me.”

I wrote: “This is something for you”.

“Shuffling and small script,” he said.  “Early signs of Parkinsonism”

“I don’t shake.”

“You will”.

He was right. I do and I take a pill to control it.  Not so bad so far, after only a year, but I don’t understand it.

Six thousand pounds and much domestic disruption later, the wiggly sitting room floor has gone. Self-levelling concrete, topped with a new carpet, provided an anti-shuffle floor so tumbles are rare.

Parkinsonism? Not enough dopamine, a neurotransmitter, they tell me.  Now, when I was a boy, the biology teacher taught that the synapse was a contact but when I was a teenager somebody noticed, with a SEM I think, that it is a gap or cleft of about 25 microns.  Naturally, as a scientist about 65 years later, I asked many questions, such as:

Where do you expect to find the dopaminergic synapses?

Are mine in the right place?

How many do you expect to exist and how many do I have?

What is the variation of synaptic clefts?

Could the synaptic clefts have widened, perhaps through general atrophy, and hence be greater hurdles for the dopamine to cross?

Could there be a shortage of vesicles?

Could there be insufficient active potential to evoke release of dopamine from the vesicles?

Could the dopamine receptors be faulty?

I can think of more but would anybody answer me?

Perhaps my friendly neurologist will find the answers.   I’ve promised to leave him my brain, which is big and interesting (to me).  He’s half my age so he’ll have time to report his findings to your readers.

But what do the questions and answers matter, say my friends, provided the pills work?

Another question, that may relate to those others, is: Why does red wine hurt me so much?  Isn’t it supposed to be good for me?  A French cardiologist once assured me that the prevalence of CV diseases in France was half that in England because the French drink more red wine, eat more garlic and make love more often.  National grocery sales may support the first two but the last, I think, can be no more than a patriotic belief and wishful pride.

Now, if I have just one glass of red wine, I wake in the night with excruciating lower legs pain.  And I do know about pain.  I have experienced, about 50 years ago, a kidney stone in a ureter.  That is said to be worse than the pain of childbirth and I have witnessed quite a few deliveries, some of which aren’t so bad and others are truly awful.

An obstetrician once asked me to help him with a study of pain in delivery.  He held a 15-centimetre rod and instructed his patient.  “Imagine that end represents no pain at all.  The other end represents the worst pain imaginable.  Now where are you?”

The woman happily complied, moving her pointing finger along the rod from no pain end as her contractions progressed.   Then she shouted: “Doctor, your rod isn’t long enough!”

So how do you measure pain?   I assure you that the pain in my legs induced by red wine is the worst.

Labrynthitis doesn’t hurt but it is truly horrible.  The slightest movement makes the whole world spin.  When it hit last February I lay on my back for three weeks and my wife fed me through a straw from a pint jug.

“It’s very common but it will pass,” say friends who know.

“Never heard of it”, say others.

It did pass and I was able to fulfil my final commitment in Barcelona.  I have been visiting a university there for several years, teaching postgraduate students how to write about their research in English.  Staff and students gave me a wonderful birthday party.

Labrynthitis has struck again: much worse than the first time.  Pills diminish the nausea and vertigo (“Don’t take too many”, warns the GP. “They can exacerbate the Parkinsonism”) but I fall over when I cross the landing.

So what causes it?

“Some otoliths are probably out of place”, says my other, and beautiful and smiling, GP who really has the best bedside charm ever.

“Do not use that word to me”, I retort, referring to ‘probably’.

“Where’s your differential diagnosis?” I ask, referring to what was my interest when I was in the trade.

“I shall refer you to a vestibular specialist in ENT”, she says. “You can ask him your difficult questions.”

So I await an appointment.  Meanwhile, a friend has warned: “Don’t be too hopeful. Diagnosis of dizziness and vertigo can be difficult. The cause of imbalance might be something simple, such as dehydration; but, rarely, it could be a brain tumour.”

“Thanks a lot,” I say.

“No prob”, he smiles.

A criterion for life is reproducibility.

Oh dear!

Don’t ask an old man how he is. He might be dead.

Read more about Tony HERE

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