My Story – sound familiar?

by | Sep 21, 2010 | 21 comments

Me and My PA

My story starts in September 2001.  The previous year I had turned forty and I was in my eighteenth year of lecturing in Further Education.  I had a very active lifestyle, running a very popular National Diploma course for full-time students, Hill Walking and Leading Walking Expeditions, playing drums in a rock band, teaching drum-kit to exam standards, playing tennis. I was always on the go.  Then, in or around late 2001 I started to feel tired for the first time in my life.  I knew what it was like to be tired after three days of hill walking – and that was a nice tired.  But this tiredness was more than physical exhaustion.  It was an insidious tiredness that never really went away.  I was even tired after a good night’s sleep and this was, of course, due to me reaching middle-age that I had read about.  There were other little indicators that middle-age had arrived.  I started to forget things, even found concentrating to be more and more difficult and began to experience breathlessness more and more.  ‘This was it’, I thought; ‘it’s all downhill from here’.

I still kept up my hectic lifestyle and one evening I was playing in a band at a local gig.  At the end of the set, and in true rock-star fashion, I jumped off the stage onto the dance-floor below.  I landed in a pool of what was probably beer and found myself suddenly horizontal about five feet above the floor before suddenly falling hard on my back.  It was quite a spectacular piece of Cabaret for a finale and the crowd were genuinely pleased to see me get up and laugh off the whole event.  There was no damage done.

A few days later my legs went numb overnight.  I awoke one morning and realised that I had no feeling from my toes up to the middle of my thighs.  And my feet and knees seemed to be bloated.  ‘Probably due to the fall’ I thought, ‘they’ll return to normal soon’.

They didn’t.  After a month or six weeks of having no sensation or feeling in my legs and feet I booked my first appointment with a doctor.  He didn’t seem particularly concerned explaining that it was probably due to the fall but that it was best to let nature do the healing.  I agreed and, re-assured that everything would soon be back to normal, resumed my busy life.

The tiredness became increasingly difficult to deal with.  Even as a child I had managed on the minimum amount of sleep and I remember being told by my friends mothers to not knock their doors before 9 a.m. which meant that for three hours in the mornings I had to occupy myself alone.  I can remember thinking it quite unremarkable that Mrs. Thatcher needed just four hours sleep per night.  And here I was, having to force myself awake every morning.  The breathlessness was bizarre as it seemed to require me to yawn and yawn and yawn as well as take deep breaths one after another.  Then my concentration took a dive and I started to experience ‘fogs’.  These are quite difficult to explain to somebody who hasn’t experienced them but it is as if there is a ‘fog’ that prevents you from understanding things clearly; it’s as if something was between you and what you were looking at or hearing or saying.  These ‘fogs’ would last a day, or two or three.  Then suddenly I would awake one morning and suddenly everything was clear again.  By January 2002 my legs had not repaired and I was now starting to stumble and had developed an ungainly gait.  This was around the time that I suddenly became aware that I could not tolerate heights and would become very unsteady on my feet when looking up.  There was obviously something wrong and one of the doctors at my local surgery sent me to a Neurosurgeon for a consultation.

“Well you had a fall, you got back up – I don’t think this is related to the fall” he said.  “I want you to have an MRI Scan to rule out a number of things”.  “What’s an M.R.I. Scan?”  I asked blankly.  He explained and I went ahead with the scan which proved that there was “nothing sinister there” – I later discovered that he thought I might have Cancer of the Spinal Cord.  Whilst all of this was going on I was still carrying out my normal hectic schedule and discovering new things wrong with me.  In Dublin with a mini-bus full of students I stopped to ask the way of two Garda who were walking away from me.  I went to run after them but discovered it was impossible.  My legs just wouldn’t go fast and I made quite a spectacle for the unsympathetic students who genuinely couldn’t see the serious side of what might be going on.  I laughed off the incident along with them but inside I knew that my condition was deteriorating.

In the spring of 2002 I started to have personality changes.  I became very irritable with students who sought help or clarification about something.  And this was the part of my job that I loved the most – helping people.  Now I would treat students as in irritant, and my mood-swings were being noticed at home where I was increasingly short with my wife.  It was around this time that I would completely forget a conversation I had had the day before, forget where I had parked my car, get confused trying to write sentences and really just wanted to crawl into a dark hole and sleep.  As I left a lecture room I couldn’t remember what I had talked about for the past hour before going into another lecture to talk about something.  I started to experience the need to cry for no apparent reason.  And I began to realise that I was depressed.  Something would have to be done but time and time again people would listen to my symptoms and laugh it off as being middle-age related.  I tried to laugh with them but was starting to get seriously worried.

I didn’t mention the severity of me trying to cope with everyday life to anyone, not even to any doctor.  I thought that the depression was my own making, and that the physical symptoms were all related to the fall.  The tiredness, or rather the chronic fatigue, was all due to middle-age – a fact confirmed by others that I talked to.

By mid-May I was close to collapse and, when walking to my local surgery for yet another doctor’s appointment, stumbled, fell in the middle of the road and couldn’t get up.  I know how it feels like to be ridiculed and scorned at for being drunk in the middle of the day because as I tried to get up onlookers thought that I was completely drunk.  A Police officer eventually helped me to my feet and I convinced him that I was not drunk.  “What’s wrong with you?” he asked sympathetically.  “I don’t know” I replied.

The police officers kindly took me home in their car – the first and last time I had ever been in a police car.   I was confused, frustrated, angry and very, very, very tired.  After an hour or so I telephoned my sister. My sister is a Sister in that she is a nursing Sister in the community – she is what used to be called a District Nurse.  She immediately drove to my house where I was stumbling around holding onto anything that was solid to help me walk. She could see that I was in some distress.  My main concern was that I had not attended the appointment with the doctor.  “This is ridiculous”, she commented, “I’m taking blood so that we can get to the bottom of this”.  At least that’s what I seem to remember.  This was not a normal fog that I was in – this was a real pea-souper with no sign of it lifting.  I was the most needle-phobic man on the planet.  I would wince at even the thought of a needle but now I didn’t care what she did and where she stuck the needle – I was just not interested.

I can’t remember much after she took blood, I cannot remember what conversation I had with my wife that evening, and I can’t remember how I got to work the next day. But I do know that I was in a classroom the next day because someone from Personnel popped her head around the door and asked me if she could have a word.  I stepped out of the classroom and she told me that my Doctor had been on the ‘phone and that I was to telephone him immediately.  They had tried to telephone me at home but they had my old number.  I went to go back into the class fully intending to talk what must have been drivel until the end of the lesson.  She grabbed my arm, “I think you ought to telephone him now, he seemed quite concerned”.  I went into my work-room.  There was nobody else in there as the all the other staff were teaching.  I telephoned the surgery and asked to be put through to this particular doctor.

“Are you ok”? asked the doctor, who was Irish.  “Yeah” I lied.  “You need to come straight away to the surgery, right now, we have a diagnosis”.

“What is it?”

“I’ll explain when you get here – come straight to my room”.

“I’ll come now.  How long will I be, I have a class at 12”?

“You’ll not be doing any teaching for a while” he replied.  At least a week, maybe longer”

I put the telephone down and went to see my Head of School to explain, or rather not explain, what had happened.  She re-assured me that there was no problem but I could already see that I was causing problems.  I stumbled to the doctors making use of any standing wall to steady myself.  To onlookers I appeared drunk – very drunk.  I went straight to the doctor’s room as instructed.  I can’t remember how I felt.  I must have been relieved that at last I had a diagnosis.  And I must have been worried what that diagnosis would be.  But everything was just too much to think about and I was desperate for any help that I could receive.  At the back of my mind must have been the knowledge that this was the only doctor in the practice that I hadn’t seen before.

“We think it’s Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia” he said.

I was stunned.

“Can you cure it?”

I remember this bit.  I was looking straight into the doctor’s face.  He looked away.  He looked down and to his right.  “We can sort you out.  We’ll sort you out.  It’ll all be sorted”

“What will happen?”

“You’ll have to go into hospital.  You’ll have to have blood transfusions.  We’ll get you in today”

“How long will I be in hospital?”

“We don’t know”

“A day?  Two days?  Three?”

“We don’t know – maybe a lot longer than that”

“A week?”

“We don’t know”

“But you can cure me”

“We’ll sort you out”

“How long will it take to cure?”

“Well, you’ll be on injections for life”.

“What kind of injections?”

“Vitamin B12.  You’ll need lots in the next month and then every three months for life”.

“What do I do now?”

“You go home and wait for me to telephone you.  Make sure that you give your correct number to reception and let me have it right now”

“Can you write down what my diagnosis is?”

“Sure”. He wrote down the diagnosis on a slither of paper that advertised some medicine and I stumbled out of the room.

I returned home and waited.  My sister was on her way to France and I phoned her mobile.  I told her the diagnosis.  “Oh my Gawd” was the unhelpful response.

“I have to go into hospital for transfusions” I told her.  “What am I going to do?”

“Well you just have to be brave” she replied in her best ‘pull yourself together’ tone of voice.  I am not a hospital brave; I am a hospital wimp.

I was now very, very confused, tired, exhausted, overwhelmed and unsure what I should do.  I didn’t know how to react.  My emotions were completely out of control and I struggled to be logical.  The doctor ‘phoned.  There was no need after all to go into hospital, “Just report to the Nurse in the morning for the first of your injections”.  I went to bed at three o’clock and slept solidly until eight the next day.  I tried to explain things to my wife but this was difficult.  Surely my condition couldn’t be due to a vitamin – you could buy vitamins on the high street.  This had to be more serious than a lack of a vitamin.

I had stuck the diagnosis to the fridge using a magnet.  “Why don’t you look it up” she said.  I reached for a Dictionary.  The root cause was Pernicious Anaemia – the sub-acute thing was secondary to that and so I looked up Pernicious in the dictionary.  I knew it didn’t mean something nice but when I saw that the dictionary stated it meant not only ‘ruinous’ and ‘destructive’ but, more worryingly, ‘fatal’.  I closed the dictionary.

I reported to the nurse an hour later in an even more confused state than before.  “Do many people have Pernicious Anaemia?” I asked.

“Not many young people like you, and not many males.  It’s usually elderly ladies have it”

“Do they live long”?

“Oh yes – people used to die with it but now we’ve got this”.  She held up a small little bottle with some re-assuring red liquid in it.

“Is that the B12?”

“Yup”

I looked at the floor when she reached for the syringe and needle.

“Now the secret is to relax”

I couldn’t relax. I felt a dull ache as the liquid entered my right arm muscle.

“Well done” she said.

I now know that this isn’t the easiest of injections to carry out painlessly.  I have heard stories of some patients who have not driven for three months because of the pain of the injection.  But mine seemed pretty straightforward.

“There – see you tomorrow” said the nurse.

“How many do I need?”

“Ummmmm”, she consulted some form.  “Doc says every day for a week, then weekly for four weeks and then monthly for three months then once every three months for life”.

After three days of injections the pins and needles that I had experienced for a year in the tips of my fingers disappeared.  After a week the fog started to clear.  After a month I felt that I could cope with life for the first time in two years.  I felt confident that improvements would continue. After my last monthly injection I could look forward to three months of not having one. My physical problems didn’t improve and I have permanent nerve damage to my spinal cord and peripheral nerves, but mentally I became more focused and the fog lifted.

I believed I was cured.  I was wrong.  Six weeks after my last monthly injection I started to feel foggy again.  The old symptoms returned with a vengeance.  I would talk mumbo-jumbo, state obvious facts that were obvious (“the Queen Mother has died” I told my wife one day.  “I hope she is dead” she replied, “they buried her nine months ago”); the forgetfulness returned, I became irritable and angry.  I suffered severe mood swings.  I couldn’t complete even the most mundane task without real effort.  I panicked. It was all going horribly wrong again.  I went back to the doctors and found the original diagnosis doctor had left the practice.

“I need another injection”

“But you don’t need one – every three months is the normal”

“Perhaps for some people but not me” I argued.

“It’s all in your head.  Would you like some anti-depressants”?

“It’s not in my head.  I’m going back to how I was”

“What if we send you to a Haematologist?”

“No problem” I said.

A few days later I was in the consulting room of a Haematologist who took blood and carried out a full physical examination.

“I need more regular injections” I pleaded, “and the doctors won’t give me more frequent jabs but I know, I really know, that I need them”

“Okay” he said.

“But why won’t they prescribe more frequent jabs?”

“Because for most people an injection every three months is fine; and the guidelines they follow state three monthly injections are the norm.  But we Haematologists know that some people need them more often.  Maybe about 18% of people with PA need more regular injections even though the amount of B12 in your blood is very high.  We simply do not know what goes on at cell level so, because there is no possibility of overdosing on B12 I’ll sanction an injection every month”.  I could have kissed him.

I now know that I was very lucky.  A great many sufferers of Pernicious Anaemia need more frequent injections than the usually prescribed twelve weekly regime but are unable to get them.  Many sufferers are prescribed anti-depressants for years before the patient manages to get more frequent injections – they then consign the anti-depressants to the bin.

And that is that.  I had to give up my career and take early retirement.  I now know that the fogs don’t entirely go away even with frequent injections.  I still get three or four days a month when I wouldn’t be able to tell you the day of the week it is.  And I have had to relinquish the rock ‘n’ roll lifestyle and take things easy.  Stress or heavy demands all lead to days where my quality of life is seriously affected and so now I take things easy.

When I had to finish teaching I started the Pernicious Anaemia Society (actually it was originally called the Anaemic Society), and in 2006 we were registered as a charity.  We have a very active website –

www.pernicious-anaemia-society.org and our members are from all over the world.  Our membership used to grow by around ten a day on average.  In 2009 we introduced a one-off membership fee of £20.  Our membership continues to grow by an average of two a day.  We now have over 4,000 members and in April 2009 we published a Review of the problems in the Symptoms, Diagnosis and Treatment of Pernicious Anaemia.

The aims of the society are to provide Information, Advice and Support for sufferers of Pernicious Anaemia – and our members are now helping to fund much needed research into the condition.

The most common topic for advice is about the frequency of injections.  Some lucky members are able to get ‘on-demand’ injections but others are refused.  This has led to many patients experiencing total frustration and often the relationship between the doctor and patient completely breaks down.  Members cannot understand why some sufferers are allowed a flexible treatment regime while others are not.  They have identified this issue as being the one that needs explaining.  And a Haematologist is working with the society to carry out research on why people need more injections than others.

The lack of a unified approach to the treatment of PA is not confined to the U.K.  Different countries use different ways to deliver the B12 into the blood.  In Canada it is Cyanocobalamin and not Hydroxocobalamin.  In other countries a nasal spray is used along with patches that are placed behind the ear.  Sub-lingual tablets are often used to supplement the injections but their efficacy is doubtful.

The issue of on-demand injections would be the single most important way in which a large percentage of the half a million people with Pernicious Anaemia could improve their life.  Until this happens some members who recognise they need for more frequent injections take matters into their own hands and travel across the channel to France or Spain where the little life-saving ampoules are available ‘over the counter’ at pharmacies.  They then self-inject and carry on their normal lives.

Most sufferers of P.A. also show a tendency to develop other auto-immune diseases.  Psoriasis, Hypo or Hyper-thyroidism, Diabetes, Irritable Bowel Syndrome, Rosacea, Eczema – they are all well known to sufferers of Pernicious Anaemia.  But the most common condition that members suffer from is not an auto immune disease but is surprisingly common among members – tinnitus.

The diagnosis of Pernicious Anaemia is often a long time coming as the symptoms are indicative that a change in lifestyle is all that is needed.  Tiredness is often seen as being due to hectic life and work schedules; Breathlessness by the onset of middle-age and maybe stress; Confusion and forgetfulness as being the result of the ageing process and the mood swings the result of overload of information.  When it is eventually diagnosed it would make a great deal of difference to sufferers if they could truly manage their medication needs by defining their own frequency of injections, just as some are lucky enough to be able to do now.

© MartynHooper.com, September 2010

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Comments

21 Comments

21 Comments

  1. grumpygit

    Thanks for that Martyn. I have been wondering for some time just what your story is. It also very clearly describes ‘the fogs’ which I have suffered from for quite a long time. Even tho I am now on monthly jabs, I cannot remember yesterday. One of Eva’s comon sentences to me is ‘Can you remember so and so?’ which I can’t. I cannot even remember our 50th or 51st wedding anniversaries, or my 70th birthday all of which were accompanied by parties. I can only look at pictures taken at the time, although I am now more able to get out of bed during the morning.
    Cheers,
    Roy

    Reply
  2. Dorothy

    Martyn,
    Your well-written story, which speaks for so many of us, brought tears to my eyes.
    “I didn’t mention the severity of me trying to cope with everyday life to anyone, not even to any doctor.” I didn’t either. In fact, I tried to hide my ineptitude, or laughed it off.

    “I thought that the depression was my own making…” My fireds would tell me to shake it off, or go walk around the malls as they did if they got _blue_.

    “…and that the physical symptoms were all related to the fall.” Martyn, I had a long list of symptoms and I never told all of them to any one phydician nor put them together in my own mind. They each seemed to be explained away by some event (auto accident), age,hormones, chronic fatigue, epstein barr, (“mono”)fibromyalgia, arthritis… whatever! As to the docs, they want to hear only two to three symptoms per visit, and the visit is to last 15 minutes, thank-you-very-much! It was only since I’v been reading layman’s terms, the language of other sufferers, that I began to string my symptoms together under the banner of a fatal anemia. Reading medical sites, back in 2006 or earlier, gave me big medical terminology that brain fogs don’t handle well. 🙂 Were those terrible electric shocks actually related to the terrible yawns, sighs, and fatigue? !

    “The tiredness, or rather the chronic fatigue, was all due to middle-age – a fact confirmed by others that I talked to.” Doctors and others scoffed when I said I required twelve hours’ sleep/night. Sleeping away days at a time was deemed depression.

    And this part you write about: ” Then suddenly I would awake one morning and suddenly everything was clear again.” I think this is one of the things that really threw me off course, thinking everything was unrelated. It would all go away for a short while. Then return with one or more NEW symptoms. Who could keep up with me? I must be a hypocondriac! Well we aren’t. Thanks to you – and I do thank you so very much, Martyn, we all have a place to get ourselves sorted out.

    Dorothy
    USA

    Reply
  3. Andrea

    I think that the main reason why we don’t get diagnosed sooner is because all our symptoms are so diverse and unseen that, not only can they not be logically linked together, but it makes us appear to be suffering from every ailment under the sun and doctors begin thinking “Hypochondriac – no-one can have all these different things wrong with them and still walking about apparently healthy-looking”.

    I would guess that most of us didn’t tell our doctors the half of it as we knew we’d see the shutters come down on their eyes and we’d be moved to the ‘Heartsink’ list. Maybe we’d have done the same in these circumstances.

    Martyn, what was the reason why you needed to opt for Methyl jabs? Were you only receiving the 3-monthly Hydroxo jabs from your own doctor and what does he say now? Do you have Hydroxo at all now?

    Andrea

    Reply
  4. Eccentrica

    Hi,
    I’ve been on this trail now since 2001 (aged 35)when I was diagnosed with PA and Hypothyroidism as a double whammy. Prior to that I had been ill for about 6 months.
    I have been finding it a problem on the 12 weekly injections for most of this time, but of late things have been getting especially difficult. I have tried talking to my GP about more frequent B12 injections and he simply tells me to provide him with evidence that this is required.
    Your decription of the “fog” is exactly where I am now, despite having had an injection only this week.

    It is reasuring, whilst somewhat depressing to hear that I am not alone since I had almost been lulled into believing that it was psychosomatic.

    Eccentrica,x

    Reply
  5. Martyn

    Andrea – I was on monthly Hydroxocobalamin IM. I switched to Methyl after having an infusion. I inject every other day 20mcg/ml or 20:1 Methylcobalamin sub-cut. I don’t bother the NHS and they don’t bother me.
    Hope this helps.

    Reply
  6. Denise

    What a fantastic article, its like i wrote it myself! Depending on my Docs mood, i can get my jab at ten weeks, but other times he says no and i have to wait for the 12 week marker, at this point i am in constant tears, so tired i cant sleep! bazaar. For the past 6 months or so i have suffered from tinnitus, i am gob smacked my Dr has not linked the two at all. I have now had PA for 16 yers since i was 30, firstly my Dr wanted to put me on anti depressents, i was so tired i wouldnt answere the door or telephone, so i was obviously depressed.

    Reply
  7. elizabeth

    Hi Martin, I hope you are keeping well. That was a very well written article, one that no doubt a lot of us P A sufferes will identify with. For me coping with the illness was bad enough, but the most embarrassing part was the trouble with my balance. I struggled to walk in a straight line, and couldn’t figure out what in the hell was happening to me, until I checked the internet and realised that it was the P A. I fell on my own driveway November 2008 and fractured my upper jaw. My Doctor asked me if I had been wearing “silly shoes” (meaning high heels ) .Actually I had just come home from work and was wearing flat shoes. By the way I am tee total. I have three monthly injections of hydroxocobalamin and just manage to get by. I have been refused more frequent injections, eg. two monthly. Thank you for all your good work on our behalf. Best regards to you and Mrs Hooper, and all our lovely members, Elizabeth

    Reply
  8. cathy

    hi Martyn
    my husband has p.a. and a very good gp who gives him hydrocobalamin ampoules to inject im as often as he likes – at the moment he is 3 weekly but it really isnt doing the job. in addition he takes methylcobalamin sublingual 5000mcg daily.he has just had his blood levels checked and the b12 looks ok – but as you know this doesnt mean much. lately he has been plagued with abcesses and suspects he may be allergic to methylcobalamin. the gp is prepared to try anything we can come up with. do you know where we could source methylcobalamin for infusion and daily top up subcutaneous jabs?

    Reply
    • Martyn

      You would need to join the society and then call the office Cathy. Only when you have signed our terms and conditions could we give that advice.

      Reply
  9. cathy

    ooops- i meant to say he thinks he is allergic to hydrocobalamin!

    Reply
  10. Andrea

    Cathy,

    Once you join the society you can post on the forum and get relevant advice for your husband’s particular symptoms. He’s off to a great start with having a cooperative doctor.

    Reply
  11. Jody

    My good gosh, Martyn, what a story! You certainly know firsthand the depths to which we can fall before we find help… I am so glad you are better now.

    Thank you for the tremendous effort you have put into the creation and maintenance of the PAS. I truly feel that I might not be here, had I not found this site!

    Jody

    Reply
  12. louise

    hello martin, iv been reading your posts and I have to say how relieved I am to know I am not going crazy after all. so much has happened to me since the summer that i dont know where to start. To be honest i cant even remember quite how my symptoms started, it just came on gradually. Everything you have discribed has been happening to me. I was told I had ‘suspected’ pernicious anaemia in august, after a lot of arguing with my doctors surgery and eventually the intervention from my gastric surgeon I have been given 8 injections over a two week period in november. My gp has stated that I wont need any more until I have another blood test checked in January. This means that any follow up b12 miracle jabs will be delayed for another month. My symptoms seem to mirror everything you talked about from the weird sharp intake of involuntary breaths i suddenly have to take, to forgetting what i want to say half way through a sentence. More scarey is the pains across my heart that come and go in sharp waves. I can easily fall asleep standing up. I was previously a busy mum of five with a career. Now im a shrivelled up mess. Iv just turned 40 years old, i put all my symptoms down to my own imagination to start with, i thought like many others that it was all part of getting older. That is until I started having severe upper abdominal pain on top of everything else. A routing blood test showed b12 and folic acid defficiency. Id never heard of it before. I havnt gone into all my symptoms of the foggyness etc with anyone as I feel stupid saying it as it all seems like too many weird things to be real. Im currently under investigations for gallbladder pain or whatever else is wrong, the docs keep changing their minds but so far I have seen ‘suspected’Pernicous anaemia on my notes so i guess its a start. Thankyou for letting me realise im not going mad after all. Felt like crying when I read your posts. Well done for everything you are doing. I am unable to join the society at the moment due to cash flow but I will definately get on there as soon as i can. Good luck to you all too x Happy new year louise x

    Reply
  13. louise

    ps…forgot to mention iv lost over 2 stone in weight too without trying, its just falling off me…dress size was 14-16 now size 8-10.not sure if thats a common symptom x

    Reply
  14. Kerry

    Hi Martyn,

    Thank you for sharing your experiences. I was diagnosed with PA 3 years ago after reporting feeling bloated in my stomach. The diagnosis seemed peculiar given that my initial problem was not identified and instead I was told to have B12 injections for the rest of my life. I was confused. I didn’t fit the profile and felt there was no real explanation given that I was only 35. Initially I had the week long booster course of injections and then injections every 10-12 weeks. I book my own injections and generally attend every 8-9 weeks depending on how tired I’m feeling. After the first few months of injections the doctors stopped monitoring my blood. I asked to have it monitored and they told me it is no longer necessary (probably due to cost). Should I insist on blood monitoring as I constantly feel tired, foggy and have missing memory. I worry that if my levels drop too low it could cause permanent damage. Kerry x

    Reply
  15. tinnitus sound therapy

    Vascular tinnitus, unlike other varieties, is not often inner-ear specific.
    This results from either increased blood flow or a narrowing of the opening of the blood vessel, both of which result in unstable blood flow that
    can be heard in the ears. The Germans are on the way of so called
    Acoustic Neuromodulation.

    Reply
  16. Feeling hopeful

    I’m 40 this year and awaiting a doctors appointment after a private blood test showed low B12 and folate.
    Tingling fingers and toes, terrible mood swings, forgetful fog and the most dreadful tiredness and fatigue.
    Reading your story made me cry at the thought that I may not be loosing myself completely! I was thinking, I’m nearly 40 and that’s why all this.
    Thank you and I pray I feel better soon.

    Reply
    • Samantha Bryant

      So am I 💜

      Reply
  17. Caryn

    I thought I’d respond in case anyone is looking for more recent comments and can learn from my experience as well. I appreciate you, Martyn, for your contributions in raising awareness and erasing misconceptions that still exist 8 years after you published your story.

    I was diagnosed with pernicious anemia at around 13-14 years old. Truthfully, those years are very much a blur for me.

    At the time I was diagnosed, I had been suffering with chronic diarrhea starting at age 7. I had undergone many tests only to be diagnosed with IBS. Back then, IBS was treated like an anxiety disorder and I was told I needed to toughen up and relax and if I could do that, it would all go away. It didn’t. None of the medications, drinks, supplements or diet changes were of any help.

    Beginning in 4th Grade, I started to struggle in school. I had extreme difficulty with following verbal instructions. It was as if I was constantly in a daze and I had to put extra, extra effort into doing well in school compared to my peers. I would write my notes out over 5-8 pages to try and remember the subject material. That’s 5-8 pages per subject.

    I spent my allowance at a teacher’s store to buy rap multiplication and division cassette tapes to try and torture myself with lack of sleep by playing them on repeat with my Walkman at night, hoping that I would wake up one day and finally, magically know it. Because any instruction I sought from teachers, peers, parents or tutoring did not resonate.

    I started getting bullied because I was seen as stupid. I would have to ask and ask the teacher or my peers how to do something and even then, I still wouldn’t GET it! What was wrong with me?! With exasperation, they would explain the steps or instruction to me and eventually I would pretend to understand so I wouldn’t face their anger or annoyance with me. I’d often feign being sicker than I really was to stay home from school in order to avoid the embarrassment. I became an expert at suddenly becoming scarce if there was a chance that I’d be called upon in front of the entire class.

    I was also very clumsy and horrible at most sports. I couldn’t run, I’d be out of breath so quickly. I could barely catch a ball. I started to become withdrawn, anxious and eventually depressed. I was a space cadet.

    “Pay attention and you’ll succeed!”

    But they didn’t know how hard I was paying attention. It was like those dreams you have of being in a fight. You mentally make that decision to throw the punch, knowing how you’d do it and how it will strike. But when you pull back your fist and let go, it’s in slow motion with all the flaws of limp hand, poor aim, poor stance and uncertain eyes, easily visible by your opponent.

    If I were a child today, I’d probably be diagnosed ADHD Primarily Inattentive.

    I went through puberty very early and so when I was 13-14 years old and suddenly sleeping constantly, my mom worried that I may have been having a deeper depression than they all thought or hormonal issues.

    I woke up late for school, struggled cognitively with great fatigue throughout the day, came home after school at 3:30 pm and went straight to bed to sleep. My parents would wake me up for dinner, of which I’d eat little of, and again I’d go straight to sleep. If it were a week end, I’d wake up at 2:00 pm, eat a little, read or do homework and go to sleep again. All day, all night through. I was literally sleeping my life away.

    The scariest part of all that was being woken up or trying to wake myself up. It was painful. I have never been in a coma, but I imagine that it felt just like that – trying to pull away from the drugs or whatever it was that kept violently yanking you back into the darkness.

    My head and eyes would instantly ache upon opening them, my chest and back would ache deeply from the effort of moving or from laying in a bed for so long. My feet and hands would buzz like bees and feel heavy, swollen and infantile. And despite all that sleep, I had very dark brown rings around my eyes.

    So my mom dragged me to my GP who later diagnosed me with Pernicious Anemia. I remember her clearly saying she had never seen or heard of a patient so young having levels as low as I did. I remember her asking if I was vegan or vegetarian (I was not).

    Because I was so young, it was explained to me that it was just a simple little vitamin deficiency and if I took these shots for 8 weeks and then once a month, I’d be fine.

    It was never fully explained to me that this was dangerous or that I could die from it. I didn’t know what pernicious meant. In retrospect, she probably didn’t want to scare me due to all of my anxiety and my young age at the time, but although I was cognitively in a thick fog, I was intelligent and I wish she had fully explained to me the condition.

    So, like any teen stumbling through their teen years, I didn’t take it so seriously and often skipped doses. I traveled and lived in Ireland for 2 years without a single shot. I didn’t eat any beef (though I now know it wouldn’t have made a difference due to intrinsic factor), because mad cow’s Disease was rampant there at the time. I didn’t see the correlation of symptoms being related to B12 deficiency and my ignorance lead to some very serious lifelong consequences.

    I am now a 36 year old woman with two children who has traveled, lived in 3 countries and had a fairly good life despite nagging ‘problems,’ that I ignored as anxiety, overworking, stress, being tired, being a mother, being kinda stupid, etc.

    Then one year, after the birth of my second child, symptoms hit me hard and I discovered through my GP how dangerous PA is.

    I now have permanent nerve damage in my toes where I can only move my two big toes, the rest having no movement beyond a pitiful little twitch of my pinky toes if I focus hard enough.. and it’s exhausting to do it. Doctors have inserted pins in all of my toes and I don’t feel it. They also whack my knees all over and I never show a reflex response which they say it from PA but truthfully, they never explained how.

    I have ataxia in my feet (toes point upward) and my gait is wide with drop foot. I often fall or run into things. I have nerve damage to my hands that result in a quick spasm and drop of what I’m holding, as if someone shocked me suddenly and my fingers automatically starfish, letting go of what’s in hand.

    I have scoliosis as a result of PA and suffer from intense back spasms. I learned only 2 years ago that this was likely the reason I suffered 6 botched epidurals and later a spinal leak with my second child. My back muscles are so weak that I slouch often in pain and I hate how I look like a hunchback sometimes.

    I have frequent heart palpitations, dizzy spells, cognitive issues like forgetting words or short term memory issues like having to reread instructions 5 times to remember what I’m doing, or standing in a room trying to remember why I went there (multiple times a day), forgetting appointments, obligations, etc.

    But the worst for me is the heavy, chronic fatigue. Always tired, always needing to sleep. I was eventually prescribed Adderall to help combat this but I can take one 20 mg of Adderall and go to sleep an hour later. This has caused significant depression for me in not being the hands-on, active and fun Mom I once was. My day is riddled with guilt and depression.

    I give myself my injections consistently now and have done so for 10 years, but I’m afraid the damage caused by being deficient for so long is irreversible for me.

    I have a daughter, age 7, who is diagnosed ADHD with anxiety, Sensory Processing Disorder, and Epilepsy. I look at her struggling to remember simple things and knowing how smart she really is – teachers had called her gifted all her life until recently.

    Seeing her suddenly regress, struggling with simple, repetitive mistakes and ‘not getting it,’ along with dark circles under her eyes, among other things.. it’s time to get her tested for PA as well in case she inherited it like me. She may still be ADHD but I wonder if PA is making symptoms worse. And if she does have it, I pray that I can successfully inform her of the seriousness of it and ensure that she never makes the same mistakes I did.

    But to have a Doctor or Pediatrician take me seriously in order to have a simple test done is proving to be ridiculously and unnecessarily difficult. And it is against State law for me to order the test myself because she’s a minor, even if I’m willing to pay for it out of pocket.

    I’m extremely worried and extremely frustrated.

    Reply
  18. Samantha Bryant

    I am hoping that you may have just saved my life 💜

    I have felt terrible over the last few months and today hit an all time high after having a blood test…

    I have balance issues, vertigo, sickness, low blood pressure to name but a few, so bad I want to die 😭

    Ordered some high dose patches and hoping they will help over the coming days 🤞

    Reply

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  1. DFRL – Stories of people with Pernicious Anaemia – Kat Hartman BA(Hons) Graphic Communication - […] An article I read with the founder of Pernicious Anaemia Society : https://www.martynhooper.com/2010/09/21/277/ […]

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