My P.A. Story

[clivealive]

Although my P.A. journey started “officially” on 10th May 1972 events from 13 years before may well have been the true beginning.

Around Christmas time in 1958 I started to get “indigestion” pains in my left chest area and these got progressively worse until the Tuesday morning of 28th April 1959 when my (then unknown about) peptic ulcer perforated and I vomited blood at work. I was taken to the Birmingham General Hospital and sent home with a letter to my doctor. On the Thursday, because I was still losing blood I was rushed to the Dudley Road Hospital, placed in a medical ward and given transfusions and Horlicks tablets. At visiting time on Sunday 3rd May I filled a kidney bowl with blood in front of my father and sister. The surgeon (Mr Aldridge) was called and he operated that afternoon removing two thirds of my stomach.

I was 17 years old and the only advice I can remember being given by the surgeon was that I would have to give up my electrical apprenticeship and “find a sedentary job”. Being an otherwise relatively fit and healthy 17-year-old I ignored Mr Aldridge’s advice, completed my apprenticeship and qualified in 1962. It was around this time that I began feeling more tired, was getting ill more often with colds and bronchitis and so took an opportunity which presented itself of an indoor job with an electrical wholesaler as a storeman/buyer which did not entail the same amount of physical work.

In September 1965 I married my 19 year old wife Valerie but shortly after Christmas she began to complain of feeling tired and listless so I got an appointment for her to see a doctor on 14th January 1966 at what was to become our family’s practice in Aylesbury. After innumerable blood tests Valerie was rushed into Stoke Mandeville Hospital suffering sub acute bacterial endocarditis possibly caused by her having had rheumatic fever some years before. She was in hospital on that first occasion for five weeks in S.M.H. before being transferred to The Churchill Hospital in Oxford for weeks for further tests.

The effects of that long separation, together with the worry of what was going on with her were to have a profound impact on me. My life, my whole world had been turned upside down and on 6th April 1966 I came home from work with ‘flu, our doctor (Wool) came round and signed me off work for a week.

Now and for the next few weeks, it was my turn to see the doctor. On 20th April, Valerie entered into her diary, Saw Doctor. Valerie & Clive. Clive’s complaint Hypertension owing to worry about me”. I was signed off for another week. The flu (if that is what it was) had been just about the “last straw” to my already struggling mental and physical condition and had dragged me down to a very low ebb. On Wednesday, 27th April 1966, Valerie noted that I had yet another appointment with Doctor Wool at the surgery. By now I was getting a bit worried about what was going to happen with me, as this was already my third week off work and more especially when I was signed off for a fourth week. On 11th May I received a letter from my employer saying they “were sorry I had been ill for several weeks” and gave me one week’s notice of termination.

I managed to get a job with a local builder nominally as a labourer who could do any electrical work needed and somehow managed to cope with the physical work involved. Sadly early in 1968 the builder “reluctantly” had to let me go, as he didn’t have enough work on hand to continue employing me. Indeed I was not to work again for over two years, until February 1970.

The psychological effect of being made redundant again, combined with the deterioration in my general health and specifically with regard to my (then unknown) pernicious anaemia, was devastating. Once the initial shock of having to go home and tell Valerie that I was once again “out of work” had worn off, I was left feeling totally deflated, useless, unwanted, - a complete and utter failure.

That unemployment around the country was running at an all time high didn’t help me much and I rapidly fell into a morose depression from which Valerie, although she tried her hardest, failed to lift me, however she did eventually persuade me to go to “see the doctor”. As a result of her examination, Doctor Wool diagnosed “depression”, immediately signed me off “work” indefinitely and prescribed the then, in vogue and rapidly becoming ubiquitous tranquilliser Valium, which, over time and in the course of the next few months, was joined by two others, Librium and Tofranil. My tummy was playing up too and Dr Wool prescribed “Neutradonna”, a huge, anti-spasmodic tablet, containing belladonna (deadly nightshade). It was a good job that prescriptions were free then, as Valerie and I almost rattled with the number we were taking.

At some time during the summer of 1968 I was sent for a “Schillings” test where I drank a glass of radioactive vitamin b12 and given a massive injection of b12 into my arm. My urine was collected over a period of time and measured for the amount of radioactive b12 passed but as the results were “inconclusive” I heard no more about it.

Being “signed off work” for such a long time meant I had to undergo an “assessment” of fitness or otherwise to return to work and I was eventually sent on a five month long Government retraining course in Accountancy in London. This started in September 1969 and ran through to February 1970. I had by then “weaned” myself off the tranquillisers and managed to not only complete the course but also to get a job as book-keeper for a large firm in my home town, starting the following week.

The spur and incentive that had dragged me off the drugs and got me through college and “back to work again”, two years earlier, gradually wore off and by 1972 I was starting to feel physically very tired and mentally exhausted. Some of it could be put down to learning the job with a grim determination to succeed that, for me, was really quite remarkable, but the rest was attributed to the ongoing, general decline in my health.

I had still been a regular visitor to Dr Wool’s surgery (now located in Oakfield Road) for more tests, none of which indicated the source of the problem and so she played a hunch and sent me for another “Schillings Test”. So, sometime during the Spring of 1972 I duly presented myself at Stoke Mandeville Hospital for another “radio active” drink and large “sample” container. The man who administered the test remembered me from four years before and told me quite categorically that “no-one has a Schillings Test done twice”. I said “I do” and I did!

The day in May 1972 that I went back to Dr Wool for the results is etched indelibly into my memory.

It was on the Wednesday afternoon of 10th May that I duly presented myself at the surgery and Dr Wool greeted me with the words “Do you want the good news – or the bad news?” I said that perhaps she ought to give me the “bad news” first. She replied “The bad news is, that you’re going to die – and you’re going to die within the next two years”. Naturally I was somewhat rather keen to know what the “good news” was. So I asked Dr Wool what the “good news” was.

She said, with a mischievous twinkle in her eyes, “The good news is you’re not going to die within two years if you have regular injections (of vitamin B12) from now, for the rest of your life".

To the relief of both of us (as I think Dr Wool was getting a bit frustrated with my long, ongoing “condition” too) the second Schillings Test had showed that I was suffering from Pernicious Anaemia and I was to have Cytamen (cyanocobalamin) injections every four weeks from then on.

Down through the next 38 years I was never monitored or asked by either doctors or nurses how I was coping with my P.A. However I was beginning to notice that in the run up to my next injection I was beginning to have some of the symptoms associated with it – pins & needles, burning legs/feet, shooting pains in hands, numbness, breathlessness, tinnitus, loss of balance, back pains, fog days etc.

On Friday 16th April 2010 I joined the Pernicious Anaemia Society and posted the following: “I was diagnosed with PA back in 1972 consequent upon having had surgery for a peptic ulcer in April 1959 at the tender age of 17. In those days I was not many years from having to be put on a diet of raw liver - 3 times a day!!! Thank goodness for Cytamen 1000 mcg...... So, for nigh on 40 years I have "got by" with my 4 weekly injections - my "little shots of Red-Ex" as I call them. However when I complain to my GP that in the run up to the next jab I start to feel symptoms returning… he simply laughs, telling me (essentially) that it's "all in the mind" and that the dosage will last for a month. How can this be? This "one size fits all" syndrome that doesn't take into account size, (I'm 6'4" @ 13.5 stones) age, activity or metabolism. I cannot believe that I am the only person with PA who experiences this feeling of exhaustion in the run up to the next shot - or am I?”

I was astounded at how many “fellow sufferers” there were “out there” who experienced the same thing and so for the last six years I’ve been learning more about the condition.

In summary then:

On page 56 of “Could it be B12” (Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.) a case is recorded part of which reads “… He (the doctor)wasn’t surprised: The woman’s history included a gastrectomy twelve years earlier that inevitably results in severe B12 deficiency if patients don’t receive compensatory B12 injections”. Should I have not been warned of this back in 1959 after my gastric surgery and given B12 injections instead of just being advised to “get a sedentary job”?

The worries about my young wife’s illness in 1966 and the loss of jobs would be reason enough cause for me to have had “hypertension” but it was not until early 1968 that I was diagnosed with “depression” and put on Librium, Valium, (anxiety & panic attacks) Tofranil (depression) and Neutradonna (anti-spasmodic). It was not uncommon for B12 deficiency to be misdiagnosed as depression so my G.P. was probably “right” prescribing the above, this being borne out by the “inconclusive” first Schillings test. That she “played a hunch” and sent me for the second, “unheard of” Schillings test four years later probably saved my life and certainly spared me having many of the irreversible neurological P.A. symptoms, so I shall ever be grateful to her for that.

My latest B12 and Folate test results (14th March 2016) are as follows:

Serum Folate (SZ1706)Normal no action18.2ng/ml3.10 – 20.50ng/ml

VITAMIN B12 (SZ1706)Normal no action469pg/ml187.00 – 883.00pg/ml

B12 Comment - B12 in normal range

On 25th March 2016 I took a heavy fall whilst walking along a public footpath, badly damaging my right hand, wrist and knee. I’m sure my general unsteadiness and awkward gait contributed to this fall and I feel it is worth noting that this occurred just three days before my next scheduled B12 injection.

I was also diagnosed with type 2 diabetes this time last year and with low Vitamin D in March this year, the symptoms of both of which “cloud” the issue because of their similarities. In addition of course there is my age at coming up to 75, that has to be taken into consideration.

When shortly after the diabetes diagnosis in 2015 I had my first (ever) “eye test” it was found that there was already damage to the retina in my left eye. This may well have been caused more by the P.A. than the diabetes as I remember Dr. Wool saying back in 1972 that my eyes would be “checked” – they never were.

Although my current doctor acknowledges the fact that, because I have the injections, the above “Normal” B12 results may be “skewed”, she still wants to “rule out” any of the others before acceding to my request, so my struggle to get more frequent injections “because I feel the need” continues.

History:

1959 - Perforated peptic ulcer and gastric surgery

1966 – Diagnosed with Hypertension

1968 – Diagnosed with Depression. Librium, Valium, Tofranil and Neutradonna. 1st Schillings Test.

1972 – 2nd Schillings Test. Diagnosed Pernicious Anaemia. Cytamen B12 every 4 weeks started.

2010 – Queried with G.P symptoms in run up to next injection. Joined Pernicious Anaemia Society.

2015 – Diagnosed with Type 2 Diabetes. (on Metformin). Retinopathy found in left eye.

2016 – Diagnosed with low Vitamin D (on supplement). Serum B12 Test result @ 469pg/ml “Normal”

Again queried with G.P symptoms in run up to next injection.

Bad fall on pavement on 25th March 3 days before next injection due.

Note: It was 13 years between the gastric surgery and P.A. diagnosis

Note: False normal B12 results and the risk of neurological damage

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

Photograph: Me aged 17 shortly after gastric surgery in 1959

**************************

As a postscript to My P.A. Story I am happy to report that my doctor has agreed to increase the frequency of my cyanocobalamin B12 injections to now be every three weeks from June 2016

[Lisahelen]

Well done Clive for having the strength and memory to put your story out. 

[clivealive Forum Support in reply to Lisahelen]

Thanks Lisahelen  

The details have always been known but reading Martyn Hooper's story prompted me to get "my story" down and in order which in turn has highlighted "missed opportunities" of diagnosis along the way

[Pixielula]

thank you for your story Clive, and the lovely photo.......

[clivealive Forum Support in reply to Pixielula]

Thanks Pixielula  

I am greatly indebted to Martyn Hooper and his book "What you need to know about P.A. and B12 Deficiency" and all my friends and fellow sufferers on the old P.A.S. forum and this community. 

I was so taken aback by my previous GP's attitude that sadly I allowed myself to "suffer in silence" but reading Martyn's own harrowing experience and those of others on here, prompted and inspired me to "write my own story" which has helped me to put everything into perspective.

In the photograph, taken a matter of weeks after surgery, my weight had dropped from 13 stone 4 pounds to ten and a half stones

[Pixielula in reply to clivealive]

I think most of us have suffered at the hands of a very bad GP. Be it misdiagnosis or for most lack of any diagnosis!! I wonder if it's a very British thing to "not want to make a fuss" so we plod along feeling worse and worse until we forget what it feels like to feel well. We put things down to our age or stress or working too hard, and as most of the symptoms come on slowly over a period of months or years it is feasible. If we went from great health one day to a complete physical shutdown the next I think it would be different, but it's the insidious nature of b12 deficiency that I suppose makes all the excuses plausible. It makes very depressing reading but also reading your story earlier was very uplifting so again thank you Clive ... Alive at nearly 75

[clivealive Forum Support in reply to Pixielula]

Thanks again Pixielula,

My wife Valerie's "heart condition" meant many more hospital visits down through the years and I worked out that during our first four years of marriage between 1966 and 1970 we were "separated" for more than 18 months due to her illness, giving birth to our two girls (she was hospitalized for weeks before and after each) and my being "re-trained" in London.

Life is full of "if onlys" and for Valerie my "if only" would be that she hadn't been so fastidious cleaning her teeth as a 16 year old and making her gums bleed whilst suffering from tonsillitis. This caused the bacteria to get into her bloodstream, lodge in and damage the aortic valve which eventually led to her death whilst undergoing open heart surgery for valve replacement in 1992 at the tragically young age of 46.

We were married for twenty-seven years and five days and it's hard to believe that she has been dead for nearly twenty-four years and yet I'm still "clivelive" hoping to "make it" to 75.

[Secondchance in reply to clivealive]

What an amazing story! I love your posts- an inspiration to us all.

[sputnik in reply to clivealive]

So sad to hear of your wife's very sad death after so much illness. I admire your stoicism so much. 46 is no age. My father died at 49 after perforated duodenal ulcers and surgery. He had been ill for years, but only antacids available then, so he grew weaker and weaker after two operations with much loss of blood. On death certicicate it said 'Heart Failure' but I know that covered up a multitude of botched surgery and lack of the medicines we have today. He had been a very fit young man.

Regards,

Ssputnikangy So inspiring Clive

[evilellie]

Thanks for the story, great photo! And well done for persisting on getting to the bottom of it all...eventually

[clivealive Forum Support in reply to evilellie]

Thanks evilellie  

It's sad it's taken me this long to "put all the facts together".  Had I been more knowledgeable and coherent six years ago maybe my GP wouldn't have laughed at me.

The photo makes me feel quite sad now that unknowing young lad on the threshold of a life with P.A.

[evilellie in reply to clivealive]

Yeah, I find looking at old photos makes me wistful, all those choices big and small, good and bad that led away from that moment...how many things could have been different. I'm not wishing my life was different really, it's just that feeling of 'if I knew then what I know now', what would I have done next? I guess that's the nature of life, and why we have so many stories about people travelling back in time to change things in our culture!

[clivealive Forum Support in reply to evilellie]

That's so true evilellie

I have written my "memoirs" called "Clive alive - with God in my life" which consists 360,000 words, pictures and documents.

My reference In "My P.A. Story" above, about when I was in Hospital in 1959, is a case in point.

Had not my father been present when I vomited blood that Sunday afternoon he would not have been available to "give permission" for surgery to be carried out, as at 17 years of age, I was too young to do so myself. 

[ndodge]

Howdy Clive, 

Thank you for sharing your story and what a story it is! It is both happy and sad. Your post about your departed wife brought tears to my eyes.

Hope you are recovering from the fall you took. As my late Grandfather would say, "Did you have a good trip?" 

All my best,

Nancy

[clivealive Forum Support in reply to ndodge]

Thanks ndodge  

My "autumnal precipitation" (or "fall" as you Americans call it Nancy) injuries are on the mend although my middle to little finger of my right hand still show signs of bruising and my wrist is still sore.

Your Grandfather's humour very much matches mine.

I hope you are keeping well and upright.

Clive

[ndodge in reply to clivealive]

Hi Clive, 

That sounds like you took a bad autumnal precipitation.  Lucky that you didn't break anything. Hope your fingers and wrist clear up and feel better soon. Have you tried Arnica cream? That stuff is amazing when it comes to taking away soreness. 

Your humor (where did that u get to?) reminds me of my grandfather's , which is why I quoted him to you!  

I made a mistake the last time I wrote. I must  have been low in B12! The mistake was, I said you Brits called a cookie a cracker when I meant to say you call a cookie a biscuit! My question is, what do you call a biscuit? They are like rolls, not sweet, that are rolled out  with a rolling pin and baked and you put butter and jam on them, or gravy. Call me curious......or nimblefingers or Nancy.

[Secondchance in reply to ndodge]

We call them scones

[ndodge in reply to Secondchance]

Ah ha, that explains! Paraphrasing Mr. Churchill, "We (Brits and Yanks) are two peoples separated by a common language!"

[Secondchance in reply to ndodge]

LOL

[clivealive Forum Support in reply to ndodge]

Hi again NiblefingersCuriousNancy.

UK Biscuits cover a multitude of things but they are mostly sweet sugary things. They can be plain or have a variety of flavoured creams sandwiched between.

Crackers are dry plain or savoury and usually eaten with cheese

Scones are a mixture of flour and dried fruits and small "dollops" are baked in an oven or "dropped" onto a skillet as "Welsh Cakes". When cooked scones are sliced open and spread with butter, jam and cream and eaten hot or cold.

I slathered my injuries with Arnica cream until it made my skin redden so had to "cease and desist".

Cooking and cuilinary class is now over....

Goodnight & God Bless

Clive

[ndodge in reply to clivealive]

Thanks for the culinary lesson!

Sweet dreams! Pun intended.

[ndodge]

P.S. Great photo!!

[clivealive Forum Support in reply to ndodge]

One thing about it  - it's not a "selfie"

[clivealive Forum Support in reply to ndodge]

ndodge  

The photo was taken in the back garden of her home in Somerset (where I convalesced with her family in May 1959) by my erstwhile girlfriend Wendy.  Sadly that relationship was to end in October 1960 soon after which 14 year old Valerie and I saw each other "across a crowded room" one Sunday morning and the rest is "history".

[ndodge in reply to clivealive]

What a lovely love story! Thanks for sharing.

[Gb57]

Great reading Clivealive and lovely photo, you must be very strong man to have gone through all those things x

[clivealive Forum Support in reply to Gb57]

Thanks Gb57   and it's a compliment that I "must be very strong man to have gone through all those things" but the sad thing is that I was almost totally ignorant about what I was going on in my life.

The night after the surgery in 1959 as my senses returned and the wooziness of the anaesthetic passed I looked to my right and left and all I could see were grey haired “old men” lying motionless on their backs under their white sheets! Was this the mortuary? Ward B-3 had been full of young people, with life and vitality compared to this place. Where was I? 

I tried to sit up - ouch! It was as much as I could do to raise my head without it feeling that I was pulling my innards out. 

Looking down over my bare chest I saw that my stomach was covered by a 9” square of lint and cotton wool. It was then that I realised that “things” weren’t as bad as I’d thought! I wasn’t dead! – yet! - just in a different (now a surgical) ward. 

Again I struggled to wriggle into a sitting position only to be wracked with pain so I lowered myself back down, sweating from the exertion. My movements (and groanings?) attracted the attention of the night nurse and she glided across the floor to my side. It must have been around midnight. 

I cannot now remember details of our conversation, nor whether she gave me anything to ease the pain, but I must have drifted back into unconsciousness until about 4.00am. She’d probably told me that I’d be “alright” in the morning. The morning came and I felt anything but “alright”! I’d slept fitfully and was grateful for the daylight when it came.  

I’ve never been one for lying on my back in bed and yet here I was being “forced” by the wound to do just that. However I could still move my head from side to side without too much discomfort so I took opportunity to look around me.

When they realised that I was also awake, both of my “old” and “grey haired“ bedside companions looked across and asked what had been the matter with me, and what I had had done. I told them “I don’t really know – ulcers I think”.

The one on my left said “I had that done three days ago – you’ll be alright after three days”. He himself looked to be half-dead! I remember thinking that if he looked like that “after three days” – whatever did I look like? Some six weeks after my discharge I went back to the Hospital for my post op check-up. Calling in on my old Ward the above chap was still there!).

That's how ignorant I was at 17 years of age. I'd been reduced from being one of the strongest apprentices on the Firm at 13 stone 4 pounds to an 11 stone weakling who was going to have to get "a sedentary job" - whatever that was. I was not given any dietary advice - just told "try it and see" and it took months for me to find out what and when and how much I could or couldn't eat.

Even when eventually, thirteen years later in 1972,  I was diagnosed with P.A. I was in no fit state to understand what it was all about and so it continued until 2010 when I joined the P.A.S.

It is said "ignorance is bliss" but I wish I had understood more fifty seven years ago when the ulcer burst - but then - had I known, maybe I wouldn't have coped quite so well.

I thank God I'm still "clivealive" today...

[Gb57 in reply to clivealive]

Clivealive I just love reading your posts, interesting, informative and soooo funny sometimes. Keep them coming!

[sunnyhoney]

Your memory is impressive!

[clivealive Forum Support in reply to sunnyhoney]

Thanks sunnyhoney , 

Some things stick in the mind better than others at my age but I'm also guilty of never throwing anything "memorable" away like diaries, photographs etc. 

Funnily enough the pop music of the day helps me ti identify the year in which events occurred. for instance Buddy Holly's "Heartbeat" hit the charts in January 1959 and I remember it being played over and over on the hospital radio - not that I need reminding of that particular year... the year I "ran away from home" and started a new life.

[Gb57 in reply to clivealive]

Did you really run away from home? 

[clivealive Forum Support in reply to Gb57]

I did Gb57 .  

I left Birmingham and went to live with a family in Somerset I'd met the previous year whilst on holiday. When they heard of my surgery they offered to have me for convalescence (the photograph was taken in their back garden) and although I returned "home" for a couple of months I became so depressed that I mounted my bicycle and started down the A38 until I collapsed at the roadside. Eventually I got both my parents together (a rare occurrence) and told them that the doctors said I should leave home and amazingly the agreed to "let me go".

The Cleveland family agreed that I could live with them despite the fact that they already had four daughters, (two older and two younger than me) two sons (both younger) two dogs and a rabbit. I slept on a "put-u-up in the living room.

 I eventually left the family when they moved to Buckinghamshire (although I did move with them) in February 1960 their new home was really too small to accommodate me too, so in October 1960 I moved into lodgings in a nearby village.

Sadly "Mum and Dad Osborn" are now long dead (as too are my natural parents) but I shall ever be grateful to Howard and Pam for the love and care they gave me those twelve months. I'm still in contact with my "brothers and sisters", three of whom live between five and twenty five miles of me, one in London, one in Devon, and the youngest one in Australia.

Isn't "Facebook" wonderful?

It was in the Autumn/Winter of 1960 that I met 15 year old Valerie at a local church whose parents became my third "Mum and Dad". 

Knowing my situation in lodgings they began inviting me "home for tea" after Sunday evening services before I cycled the 12 miles over the Chiltern Hills to my room. After a while (probably at Valerie's suggestion) it was "come over on Saturday afternoon" then "Why not stay overnight" until it was "Come over Friday evening til Sunday night."  After four years and a day we got married.

Without the love and care of the Cooke family I doubt I'd have survived to become "clivealive" so thank you too John and Milly and sister Pamela too. John and Milly now long dead too but I keep in touch with Pamela albeit she now lives an hundred miles away up in the East Midlands.

It's funny the way things "turn out" but I'm convinced that God has been in my life all through.

[sunnyhoney in reply to clivealive]

Well I'm very impressed, I can't remember what I did 5 mins ago some days! Your story is very touching 😊

[clivealive Forum Support in reply to sunnyhoney]

I did "cheat" a bit sunnyhoney .

As I knew little or nothing about my own parents early lives and with my wife dying at such an early age I determined to write down an account of my and Valerie's early lives together for our two daughters who themselves were only in their early twenties when their Mum died 24 years ago.

Sadly they are still so "raw" at the manner of their Mum's death that they still get upset at thoughts of her and have been reluctant to read any of the 330,000 words of my autobiography where she is mentioned and which I completed 16 years ago.

However my granddaughter has read all about the grandma she never knew so it's not been entirely a waste of time and it's all on memory stick so my girls can read it whenever they feel "strong" enough.

So when I came to "put together" "My P.A. Story" last month I had all the details to hand but had never connected it all up  before - just treated them as separate incidences in the Chronological history.

[Gb57]

What a journey for you! You must be a very strong man to have coped with those things in life. I'm one of 8 siblings, my Mum died 4 years ago leaving 48 children grandchildren and great great grandchildren, she was amazing lovely Mum, Dad died at 58 he was alcoholic. I have 2 children son and daughter I love them dearly they are my world! 

[clivealive Forum Support in reply to Gb57]

Keep hold of the good memories of your Mum.

Best wishes...

[Hidden]

What a story and how you have suffered. Thanks Clive. 

[clivealive Forum Support in reply to Hidden]

"Ignorance is not bliss" Hidden  - if only there had been communities like this 57 years ago.... but then I'm still "clivealive" at 75 next month

[Hidden in reply to clivealive]

Ah wonderful. So glad you are ok now. 

[clivealive Forum Support]

It's the 44th anniversary of my P.A. diagnosis today.

I vividly remember being so elated that it was at last now known what was wrong with me that it felt like I was walking on air.

Thanks again Doctor Rosemary Wool for not "giving up" on me.

[clivealive Forum Support]

A postscript to My P.A. Story.

My doctor this morning "authorised" me to have my cyanocobalamin B12 injections every three weeks from now on instead of the four week regime I've been on since 1972.

I had gone (along with my wife Gill who has also read Martyn Hooper's book "What you need to know about Pernicious Anaemia & B12 Deficiency") prepared to bombard her with facts, figures and ongoing symptoms, but in the end we found that she had already partially accepted the arguments we presented at my previous appointment 3 months ago when I was diagnosed with low Vitamin D which she at the time had thought might have been part of the "trouble" and prescribed 800 units per day.

A blood test last week showed my Vitamin D level is now OK with no diminution in my neurological symptoms - so that wasn't the "trouble".

She also accepted that, despite my B12 level in March being 469pg/ml “Normal”, but because of the symptoms, I do need more frequent injections.

This has been a long, long battle, but I'm pleased that in my own case the war is won.

I wish all my dear readers the same success with their own personal struggles with their doctors to get the treatment they need and deserve.

[HonorElizabeth]

An inspirational story. I was feeling sorry for myself now I'm counting my blessings. Thank you.

[clivealive Forum Support in reply to HonorElizabeth]

As I've said before HonorElizabeth I lived too long in ignorance and sadly there's still too much of it about within the medical profession.

I just wish I knew that doctors and nurses get to read the pleas for help on this community site.

Thanks for your comment. Be well.

Clive

[Dreamer12]

Dear clivealive

I read your inspiring story about you and your wife. Thank you for sharing your story it was very interesting and it will help many people to keep going when they have health problems and in particular deficient B12. I am sorry to hear about your wife. She would be very proud of you helping others in the work you di. My grandmother had PA and said "she felt like she had new Duracell batteries" after every injection." Take good care Jane x

[sputnik]

Ssputnikangy to clivealive,

Although I've read many of your many posts, only just read your whole story. What a terrible journey, which so easily could have ended in your premature loss of life. I wish you very good health for many years.

I've just posted to you and others, but remembered a few other things I've experienced during the last ten years. I retired from a career as an English lecturer at age 60. My dep- ression and anxiety got a lot worse. Stomache/digestive problems, nausea etc. Then diagnosed with !BS. Bleeding after/during no.2's, 3 colonoscopies and some polyps removed, along with diverticular disease. Heartburn and pain, so put on PPI's indefinitely. Stopped taking them about three weeks ago as I've read they interfere with B12 absorption. Sore throat and ill after antibiotics, oral thrush. My husband eventually insisted I saw an ENT specialist, who said it was laryngeal reflux and high stomach acid. Treated with gallons of Gaviscon Advance and Omeprozole plus meds for thrush.

Then he became ill again. He had already had prostate cancer (treated with total surgery) and then in 2013 rectal cancer. This time it was too late.

As i said in a previous post, the stress and anxiety levels have escalated over the years since 2013, when hubby was diagnosed with rectal cancer. The many tests went on and we were eventually told it was terminal.

All I'm pointing out here is that continued prolonged stress must have depleted my B12 levels I would imagine. See doctor on March 7, and I believe he is going to send me for another blood test (don't know what sort as he has only done a full blood count so far.)

The low B12 was discovered when I paid for a private thyroid test. My thyroid function OK, but B12 196 - insufficient, the doctor at bluehorizon medicals told me.

Do you know which test I should ask my GP for on March 7?

Thankyou in hope,

Ssputnikangy (anjela)

[clivealive Forum Support]

Hi sputnik as you will be aware I'm not a medically trained person so my "advice" is limited only to what I have learned since joining the Pernicious Anaemia Society and what I have "gleaned" from others in this community.

I am saddened to read of all the problems and tummy troubles you have suffered and especially with the loss of your husband.

As to the tests you should request initially they are for serum B12 and serum Folate.

In addition it may pay to have your Vitamin D level checked whilst you are about it as it appears that a large percentage of us (including me) in the UK are deficient and some symptoms are similar to those of B12 or Folate deficiency.

If your doctor does a Full Blood Count that will cover any Iron deficiency you may have but B12 and Folate are not normally included automatically.

I hope all goes okay with your doctor on the 7th March and it will be interesting to see a copy of the results when you get them and to let us know what treatment your doctor has prescribed.

I wish you well

Clive