Ceri's Story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

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Ceri's Story

Postby Hayedwards » Sat Jan 07, 2012 1:55 am

Hi. I'm in my late twenties and have been suffering for a very long time with symptoms related to low B12/ pernicious anaemia. It's hard to know where to begin because my story with my health is complicated and I'm not entirely sure how and where it all began.

All I can say is that when I was a kid I was very healthy, I was full of life and energy, I was very outgoing and really enjoyed life and I rarely got ill, if I did it was occasionally and something minor like a cold, tummy bug or ear infection which I would get over in a few days. The only other thing I had was eczema from the age of 5 which I grew out of by the time I was 11 and I had all the usual childhood illnesses that everybody gets.

When I was 7 I became vegetarian...put two and two together and realised that the lamb running around in the field was the same as the lamb you have with your Sunday Roast, so I just didn't eat meat at all for years...until I was about 20...I'm not sure whether this played a part in the onset of my pernicious anaemia...I had dairy pretty much every day. However for a short while I had more frequent illnesses ie conjunctivitis, tonsilitis etc...but that all settled down and I was back to normal. I could be quite forgetful as a kid...not sure if this is related.

So, yeh just generally really healthy. No health problems as a kid.

When I was 10 I went through a time where I had a lot of migraines, but this seemed to settle down by the time I got further into puberty and stopped when I was 11. When I was 11 I have always been a bright, bubbly kid, but a few months into starting secondary school and I was very withdrawn, not much confidence, constantly daydreamining...I feel this was linked to some issues in my life around that time but I thought I would mention it as it reminds me of how I went in the last year or so prior to my diagnosis...very withdrawn and reclusive, scatterbrained and forgetful etc feeling like I'm walking through treacle. I came out of this though, so again perhaps this was nothing to do with low B12.

I came out of this period of my life and as a teenager I was healthy, happy, had a fantastic social life and really enjoyed my teenage years. Again rarely got ill, and never had any major health problems.

At about 17 I went through a time where I was getting tonsilitis quite frequently...around 3 or 4 times a year and because of this I was picking up every cold, flu, virus, ear infection going. I didn't seem to have as much energy as other people.

Then for the next 2 years I was fine...no health problems rarely got ill and the rest of my teenage years were great.

When I was 19 nearly 20 I had what I thought was glandular fever, although never had a proven test...my symptoms were similar...and it really knocked me about, I had chest infections, chronic tonsilitis, was constantly tired and exhausted. Not long after that I also had labyrinthitis which made me incredibly dizzy to begin with, but after that subsided after a few days I never really lost the off balance, rocking boat sensation. I put this down to the inner ear infection I'd had as this happens to a lot of people, they never quite fully recover their balance completely...around that time I was also told I had low B12 and was anaemic...I didn't think anything of it at the time, just put it down to being vegetarian and started eating meat...and I also went on iron tablets for a while. I had to take a semester out of uni to recover from all of this and I felt so sorry for myself at the time and made such a big deal out of it...little did I know at the time that far worse health problems were yet to come!

So in my early twenties, I jogged along feeling okay apart from the off balance feeling I always had...I also had a couple of allergies around that time to Quorn, cephalexin (I took for an ear infection) and any drinks with blue food colouring in them. I was alright for a year and a half.

Then I began to suffer with crippling gynaecological pain...I was in so much pain I would be up all night with it......I got really depressed about this and the effect it was having on my life...after lots and lots of tests they never actually found a cause for this, but I was referred to a gynaecologist who tried me on a few different tablets and one of them must have worked as it got better. Around the same time I had a migraine every day for about a month.

Then at 22 I was quite well for almost two years, apart from the slight off balance problem and I also had a lot of things like bloating and yeast infections and I suspected I had a candida overgrowth, tried to stick to the anti candida diet but just couldn't do it (I don't think many people can). Other than this I felt healthy and lead a normal life...so myearly twenties were good.

Then a couple of years later I started to get these attacks where I would feel as though everything was rushing to my head, I was be extremely dizzy, feel disorientated, have visual disturbance and pins and needles around the back of my head and in my face. This would cause me to panic and at the time I thought I was having panic attacks. It was horrible and really embarrassing because it happened at an interview at an agency and I felt I just wanted to run or go to A & E...I didn't feel able to tell the lady doing the interview what was going on at the time and she misinterpreted my body language as being anxious about the interview and began talking down to me like I was a little school girl...it was the most humiliating experience of my life...there I was thinking "I need to get to a hospital something is wrong with me" and there she is lecturing me on confident body language (I was just physically ill, I'd been to interviews before and hadn't been like that at all)...these attacks continued to happen and I began to feel unwell all of the time. I developed OCD around that time and virtually became agoraphobic for about 3 or 4 months. Had hypnotherapy and CBT but what we didn't realise at the time was that there was possibly a physical basis for my panic attacks.

Over the next year, healthwise I was okay and I had the attacks less frequently.

Then in 2007 it all came back with a vengeance. I was getting those attacks worse than ever, and I had what felt like a permanant migraine without the headache, I was constantly dizzy, had pins and needles down the one side of my face, and down my right arm, sometimes I felt as though the one side of my face or tongue was swollen, pins and needles at the back of my head, in my hands, generally really tired, and my brain was very foggy, I couldn't think clearly and I had problems with my short term memory. I would get the feeling that I was about to pass out or have some sort of fit and I had sleep paralysis where I would feel as though I was having a fit. Some days I'd feel so ill I'd be unable to get out of bed. I became extremely withdrawn during that time...I was in hospital for a while and had an MRI, a CT, an EEG, blood tests you name it I had it...all tests were inconclusive. I ended up having to go down to part time at work...people at work were not supportive and I had to move back in with my parents around that time (I was nearly 25 and had not lived at home since I was 18...I felt like a failure). It was a horrible time in my life. All of this went on for about a year...and then I stumbled across a programme on electrical hypersensitivity. I realised that my symptoms seemed to flare up more when I used my mobile phone...so I stopped using it, and kept away from dect phones and Wifi...and it really seemed to help...so I put it down to electrosensitivity (which I still do feel I have). That year feels like one long bad day...all foggy and unclear. Low B12 was mentioned once, but I had no idea that this could be what was causing my symptoms, and I never had any treatment for it, other than to take B12 supplements from Holland and Barratt, which did nothing. At the time I just thought it was an extra little thing I had, and didn't realise this could be the cause of all or most of my symptoms, I had never heard of pernicious anaemia at the time...also most people can use mobiles and be around Wifi and not get ill, so there must have been some kind of problem with my immune system for me to react like that???

For the next 3 years I got a lot better. I still had the off balance feeling, a lot of yeast infections and I would still get the odd attack of electrosensitivity if I'd been around an obvious trigger...but that was all...it was manageable and I generally stayed quite well and I had a lot of energy and was very active.

Then just over a year ago I began to get gynaecological problems again, I also had persistent cystitis and this is really embarrassing but I think it's relevant, I managed to pick up threadworms (I know they're thought to be harmless, but I have heard that things like tapeworm can cause pernicious anaemia, so maybe threadworms can if you have them for long enough) and I couldn't get rid of them for about 6 months...it was a nightmare, they just seemed to be resistant to the medication I was taking...during the time I had them, as well as the gyno pain and cystitis which was pulling me down something rotten, I also kept on having bouts of diahorrea, I would have weeks where I would have this several times a day and my stomach felt generally wierd and I had wierd stabbing pains in my stomach that would come and go. I began to feel completely drained. I started to have days where I just felt generally rubbish, my skin would be dry, I'd be foggy headed, I'd feel extremely tired, but it was a wierd irratated tiredness. People would comment that I looked awful, and not long after that I began to get breakouts of really sore skin around my lips and tongue. I just thought I had a bit of a virus...but people kept telling me I needed to go to the doctors. The first doctor I went to told me it was a virus or depression and I went on anti depressants for a while which picked me up a little bit for a few weeks, but not long after that I started to feel like that again...I was having good and bad weeks with it, but the bad ones were becoming more frequent. I also noticed that I felt so foggy headed on the bad days, I had memory and concentration problems that were so bad I was like an old woman with alzheimers and they were getting worse and worse...I was barely 29...I started to feel old. The gyno and cystitis problems were persistent as were the balance problems but the other stuff ie memory and foggy headedness would come and go as would the sore lips.

I went back to my doctor who took one look at me, listened to my symptoms and immediately said "This sounds like a vitamin B12 deficiency...we'll do a blood test and it's very easily treated with B12 injections". So I thought this was the answer...I also at the time thought it was a minor illness and easy to treat...I had no idea what was in store. The test came back as low B12 but not low enough for them to do anything about it as it was 183 which is just within the normal range (I now know that was low enough to be causing my symptoms but at the time just went along with you're probably just depressed).

The beginning of 2011 I carried on like that, and then around March it began to get worse. I'd go outside and realise that I felt drunk, although I hadn't touched alcohol, I was walking around at work like a zombie barely speaking and barely knowing what day of the week it was...my memory was very bad and I'd constantly find myself in embarrassing situations where someone would tell me something and I'd get it all wrong because I'd forget what they'd said a few seconds later. I still genuinely believed I just had really bad depression. My lips were now permanatly swollen and sore and not long after I began to get dry skin and pins and needles, almost a burning sensation in my hands and feet, my feet felt like I had been walking in the snow for ages and my hands were so dry I was constantly grabbing for the moisturiser...I felt extremely run down and just not all there...I also noticed pins and needles and soreness in my tongue. The next frightening thing I was experiencing was that if I was talking to people I'd forget what I was talking about mid sentence, I'd forget words and names of things and I'd stumble over myself...I quite often sounded the way people with learning difficulties sound...which was really frustrating. I would have days when I just didn't really feel real, like I was trying to function when I felt so not with it at all....I also felt like this for a while a few years ago. How I must have come across to other people doesn't bear thinking about.

I struggled on with this, I was up and down. I had peristent gyno pain. I lost interest in sex completely (and I was only 29). I'd noticed the SEVERE lack of libido for at least two years prior to this and had really worried about it a lot, I felt like a decrepit old woman. The bad days were now outweighing the good. I went back and forth to the doctors a lot but was always told it was depression or anxiety. I accepted this, and even went to a CBT therapist who was trying to change my thought patterns and "mistaken belief" that I had a serious illness...and I went along with it thinking it would help...I got into all this stuff about how the body and mind were linked when I had possible pernicious anaemia that was untreated and geting worse all the time!!!

By this stage I was still dragging myself into work, but had no energy to go out socially, so I did that a lot less...I just didn't feel up to it.

Then in October 2011 things took a drastic turn for the worse when (I had been getting rashes (urticaria) for a few months prior to this and I thought I had a few allergies). I had another rash and then one night woke up to find my tongue felt numb, I'd had pins and needles in my tongue before due to this, but this time it really felt swollen, then my throat felt swollen and I began to panic because I was worried I was going into anapylactic shock. Instead of going to A & E I just froze...and hoped it would pass...I know I should have gone to A & E...but I just froze with fear. This happened again a couple of days later and again a couple of days after that...and I was also getting swelling in the side of my face. I took a few days off work...well I turned up and the people I work with now are really supportive (very different from the people who I used to work with) and they told me to go home cos I was really ill. My family said I also had yellow skin and looked as though I was jaundiced. This continued happening and I was issued with an epi pen and was told to be careful about what I ate until they'd figured out what I was reacting to. I was also referred to an immunologist. The other thing was my hair was falling out in the shower, that had been going on for about a year...now I was losing even more of it and it had gone really thin.

I now had swelling in my tongue and face all of the time and could not link these symptoms with a particular food. When I went to the immunologist she said she felt it was more likely to be something called chronic angiodema and unlikely to be a food allergy as I was ill so much of the time and couldn't link it with a specific food. They did a lot of tests as this can be linked to hypothyroidism or pernicious anaemia or other conditions. Low B12 came up in all the blood tests I'd had previously and was flagged up in red several times, yet all the doctors prior to this had failed to mention it and told me I had anxiety/depression or a virus. My B12 level was now 154 and I was also slightly anaemic.

I struggled on with this and chronic angiodema for which I was taking antihistamines to keep it at bay for another two months, whilst badgering my doctor about B12...she tried me on the tablets...which didn't work...and then just before Christmas I started on my loading doses of B12.

But I'm still not feeling well...I also have chest pain more recently as well...I'm at a loss as to what to do next. I feel this has ruined my life and taking huge chunks of my twenties away when I could have done a lot more with my life...I just feel so low at the moment and worried that I'll never have a normal life. The angiodema in particular is the worst symptom as I never know whether I need to go to A & E with it or not...
Last edited by Hayedwards on Tue Jan 15, 2013 9:57 pm, edited 3 times in total.
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Re: Ceri's Story

Postby sahara » Sat Jan 07, 2012 5:09 am

Welcome, Ceri, and my sincere condolences.

It will get better. The improvement may come slowly, but it will get better.

The Forum moderators, who will be along soon to greet you, are very knowledgeable about managing PA. Their guidance has led to much improvement in treatment and quality of life for many of us here.

Are your family members any more supportive or understanding now that you have your diagnosis and start on treatment?
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Re: Ceri's Story

Postby anotherwithpa » Sat Jan 07, 2012 9:19 am

Hi Ceri,

Firstly wqelcome here, and thank you for wrtiting your story!

There are things in your story I recognise, such as going yaundiced etc, in my case called a mistery virus etc.
Re:"I feel this has ruined my life and taking huge chunks of my twenties away when I could have done a lot more with my life..." yes its not a good life one lives before diagnosis, and it is sad its taken so long to get treatment, but you will feel a lot better in time. Its time you need now with enough B12 and folate and ion to get your blood and body back to how it should be. It takes some 3-4 months for all the bloodcells to be replaced in the body, and longer for neurpological damage to repair.

Just try to make sure you get the treatment required for neurological issues, and you also get treatment for low folate and iron to be able to recover, see:

http://www.patient.co.uk/showdoc/40001009/

Management1
•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.
•Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Clinical Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.24 It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.
•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every 2 months for life.1

And:
http://www.cks.nhs.uk/anaemia_b12_and_f ... cy#-321498

Anaemia - vitamin B12 and folate deficiency - Management
How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement:
Seek specialist advice from a haematologist.
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

The above will be found in the BNF, BNF 54 (2007) British National Formulary. 54th edn. London: British Medical Association and Royal Pharmaceutical Society of Great Britain.
GPs are suposed to follow the guidance given in the BNF.

I hope this helps and you will find a lot more improvement over time with the right treatment,

Kind regards,
Marre
Last edited by anotherwithpa on Sat Jan 07, 2012 11:07 am, edited 1 time in total.
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Re: Ceri's Story

Postby kimks mom » Sat Jan 07, 2012 2:15 pm

I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Ceri's Story

Postby JDee » Sat Jan 07, 2012 7:54 pm

Hi Ceri and :text-welcomewave:

It is really sad that this condition is still not being correctly recognised or (in a lot of cases) sufficiently treated. This business about not treating people as they are 'just' under the lower ref range is awful. There are likely to be many people with those sort of levels who are doing just great but if someone comes to a GP with lots of symptoms they should be treated. :evil: People can have symptoms with levels in the 400s like me!!

Mum had a lot of signs including facial nerve problems, and her GP said she had never heard of this being linked to PA. Funny just how many people have had something similar.

Apart from the b12 side of this, folate and iron can also be giving you some of the symptoms. All of these things, along with potassium , can each be affected by the others. You do need to get your full printed blood results to see exactly what has been tested and where you stand.

Early days in treatment for you and whilst I agree this is 'easy' to treat, it is a slow process and getting adequate treatment to repair the damage will take some effort. The good news is that repair is still possible.

Good luck with your reading etc.

Jac
Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: Ceri's Story

Postby BeeNumber12 » Sat Jan 07, 2012 9:35 pm

Hi and welcome here :)
I was like you in that my symptoms would wax and wan. I've wondered if the roller coaster effect in my own medical history is due my dentist's use of nitrous oxide on me. I received it also during general anesthesia.
Could that be a factor for your up and down history?

About family not understanding, try looking up Pernicious Anemia and or B12 deficiency on YOUTUBE and you will find shows for the family to watch online.

As the the angioedema, if you have any sign of anaphylaxis, do call for emergency help and carry an EPI Pen. I just read that low b12 can trigger angioedema. As Pat says, your best bet is taking control of your own health. Start by reading and learning. Good wishes,

Dorothy
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: Ceri's Story

Postby Hayedwards » Sun Jan 08, 2012 5:55 pm

Thank you so much for your replies. There is a lot of information there. I feel a lot more informed about it all now. It seems such a complicated condition, and I'm at the stage where I'm so depressed about it all, and really wish I wasn't going through this, but I'm now determined to do everything within my power and anything it takes to get well finally...I'm still young and don't want to go through the rest of my life being unwell.

I forgot to mention in the 3 or 4 months prior to starting my injections I began to lose a lot of hair when having a shower, I don’t have bald patches or anything drastic like that, but I was losing a LOT of hair. Also the pins and needles in my hands although they come and go over the last year, when I’ve got them, my hands feel very dry, almost like a burning sensation and the same goes for my feet (like I’ve been walking in the snow) that kind of sensation. Another thing I forgot to mention is that in the year and a half leading up to my diagnosis my periods became very light.

My family are now more supportive than they used to be. When my health problems first began and I had my first long period of ill health (the glandular fever/labyrinthitis stage) in 2002 they were very supportive, but when it went on for such a long time they began to lose patience. In 2005 when I began to get the electrosensitivity problems and what I thought was panic attacks, again they were really supportive but we all thought at the time that I had an anxiety disorder...

When I became ill again in 2007 and this time it was REALLY bad...they were not supportive at all, they would say "you can't be ill again, look at your track record...you've had problems with anxiety, it's all in your mind."

However over the next few years I really picked up. I had some symptoms but I wasn't ill like this...and I was able to lead a fairly normal life.

This more recent bout of ill health that began at the end of 2010 because my illness was now very visible...they were very understanding and supportive...however they still sometimes make me feel that I'm letting them down and that it's somehow my fault I'm not better...so yes, Dorothy I might show them those you tube videos.

The doctors are still unsure as to why I have it...it may be to do with the fact that I was vegetarian from the age of 7 - 20 or it could be just an autoimmune thing that started after a virus...or to do with the fact that I had threadworms for 6 whole months (so embarrassing I know).

I have never been officially diagnosed as having pernicious anaemia. Just told that my B12 levels are 154. My intrinsic factor is okay but I've been told that those tests are not very accurate for a lot of reasons. Martyn has told me those tests are only 30% accurate as they test for antibodies and if you have little to no intrinsic factor you don't even produce that therefore the test comes up as negative even if you have got pernicious anaemia.

I am worried because I'm 29 now and I'm at the age where most people are starting families etc. I would really like this as well, I always just assumed that when I was older I would have kids. If I don't have children by the time I'm in my late thirties I will feel that my life is incomplete...as I always dreamed of being a great mum...people keep telling me I'm not getting any younger (but these are people who didn't realise about my health problems). I am really worried that if I become pregnant, the fact that I have this illness means it will be dangerous and the baby will be born with things wrong with them. This REALLY worries me. The other thing is partly due to the gyno problems (ie pain) and partly due to the effect this illness has had on me I've completely lost all interest in sex...I've noticed this over the last year...but then again...I've lost interest in absolutely everything...I constantly feel foggy and pulled down and unreal. I just want all my good feelings to come back...I'm still young but feel so old...and at the same time I AM getting older and time is running out to start a family etc so I feel constantly anxious about this. I feel as though everything has been taken from me...my confidence, my life, everything!

I am so angry about how long it has taken for them to diagnose and do anything about it and by the sounds of it I already have nerve damage...If the doctors hadn't have continued down the depression/anxiety route I would have been treated a long time ago and would never have got this ill.

Marre...I will bear in mind what you said about folic acid...the doctors have told me my folic acid is normal...could be better but normal...bearing in mind what I know about how low your B12 has to be before they will do anything about it I'll take that as I need folic acid. Do you take it in tablet form? Does it have to be prescription or am I okay to just buy it from a shop?

It's interesting that my B12 levels seemed to be linked to other problems I have such as candida and electrosensitivity.

Pat...I've read some of the links you posted and I'm worried about this pottasium thing. What is blood work and what do I need to do to make sure my potassium levels are okay?

I've had neuro tests in the past which have proven to be fine so I'm really hoping that means I don't have permanent nerve damage...although I'm realy worried about this. I will check with my doctor. It is so hard having to really push for what you need to get well when you are feeling so ill and we shouldn't have to...the doctors should be more informed about this. It's difficult when your being told one thing and then your told something else and you just don't know what to believe...

Andrea M...I found your story very interesting. You’re absolutely right...my B12 levels were low but not low enough, therefore I was being told they were within the normal range and because I had gone and complained of anxety/depression before (which was probably this) they used that as an excuse to say that it was still that (I probably never had anxiety or depression...I probably had this all along and thought it was that as it’s a normal response), even now people still think I have that kind of an illness, although over the last year when I've been more open with people about what's going on people have started to understand and I've had a lot of support from people.

You sound very similar to me with the electrosensitivity and the candida. You mentioned that this can be linked to mercury toxicity from amalgam fillings...with me that isn't the case as I have no amalgam fillings...that's one thing I've been lucky with, I've never needed to have any dental work done in my life.

Dorothy...thanks for your info on angiodema...I will bear that in mind.

I'm so sorry if this post seems so negative...I'm just all over the place emotionally at the moment with all of this right now...but thank you so much for your support.
Last edited by Hayedwards on Wed Jan 18, 2012 5:48 pm, edited 1 time in total.
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Re: Ceri's Story

Postby BeeNumber12 » Sun Jan 08, 2012 6:17 pm

Don't worry, you can vent on here any time. You are among people who understand your emotions, your condition and your anger. Glad to read you have determined to learn, then fight for high standards of treatment, treatment that will be life-long. Some YOUTUBE videos are good. Our own PAS Moderator, Pat, (KimK's Mom) is there as well as author, Sally Pacholok a book that might also be useful to your family.

Dorothy
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: Ceri's Story

Postby skippychick » Sun Jan 08, 2012 6:21 pm

Hi Ceri

Just wanted to drop by and say 'Hi". Sorry you've been through the mill. You're not alone- sadly most of us have had to wait a long time for diagnosis and/or adequate treatment. Even then, it's all so personal and subjective- we are all different and most of us are juggling wellness.

I would just raise the point that you've got a lot of stress and worries at the moment and don't dismiss leaning on antidepressant medication to help you over the hump, if it works for you. Once I had a low B12 diagnosis I was keen to pin EVERYTHING on it but after juggling treatments for 3 years I now realise this condition is complex and I have to keep an open mind. I prefer alternatives and so regularly do meditation, hypnotherapy, running, walks, frequent breaks, EFT, aromatherapy, Bach flower remedies, herbal remedies, etc. The thing I'm treating is feeing stressed/not able to switch off/anxiety.

The possibilities of how and why are endless and can tire an analytical and intellectual brain.

As for whats caused it, I'm three years down the line of trying to find out and although slightly wiser I don't think I'll ever completely know for sure what went wrong. Which has frustrated me in the past as I like to have all the answers!

Some things are complex.

Anyway, this is just my humble view. I guess all I'm really saying is you're going through a highly stressful time and may still need help to control the anxiety ( even if low B12 is the root cause ).

Best of luck.

Sarah

The priority is to get treatment. Loading doses, frequent jabs until no further improvement in the neurological symptoms.
Dx with b12 deficiency in 2008 (level of 142 and accompanying nerve damage ). On daily methylcobalamin s/c jabs.
Father has Parkinsons ( dx. 1997) and dementia ( dx. 2005) and B12 deficiency ( dx.2008 ) but has responded well to regular B12 injections.
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Re: Ceri's Story

Postby JDee » Sun Jan 08, 2012 8:27 pm

Hi Ceri.

I don't know if you have read any of Dr Chandy's site but here is a link -

http://www.b12d.org/content/symptoms-as ... deficiency

I know it is a difficult time but you are going to need to gather your strength and get educated to enable you to face this complex condition head-on. Take care.

Jac
Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: Ceri's Story

Postby Hayedwards » Sun Jan 15, 2012 12:47 am

Thanks for your replies.

Anyway to briefly sum up what I was going to say is...basically after over a year of suffering with these horrendous symptoms and trying everything possible...going from being tested for everything under the sun...all tests were unremarkable...my B12 levels were only mentioned once and I didn't know at the time that this could have been what was causing all of my symptoms...I just thought it was a minor issue and thought I could solve it by increasing the levels of B12 in my diet. I also took a B12 supplement. With my symptoms getting worse over time and not better, I was told it was anxiety or depression although there was no trigger for me to be anxious or depressed other than my health problems and the impact they were having on my life. I went down the route of antidepressants and seeing a therapist...genuinely believing my problems had an emotional or psychological basis and not a physical one. I then thought I possibly had ME or something like that. It was only when I took a massive turn for the worse and developed angiodema and was referred to an immunologist that it was pointed out that my B12 levels were worryingly low (now 154) and had been getting increasingly low with each blood test. I was referred back to my GP who put me on high strength B12 tablets. These made little difference to my blood results (it increased slightly to 157) although I had no improvement in my symptoms and how I was feeling. After speaking to Martyn Hooper he suggested going back to my GP and asking for a therapeutic trial of the B12 injections, which she agreed to...The trial was supposed to be for a few months and if it helped I could continue. I was also told it can take a few months of treatment for you to really feel the benefit.

I started the loading doses just before Christmas and to begin with, didn't really feel any different...and the angiodema in particular was a huge problem (may or may not be related to low B12). After the 4th injection, I really began to pick up. I was no longer losing hair in the shower (previously was losing loads!), I was less dizzy, the fogginess in my brain had imprived 75%, I had a lot more energy, my skin was no longer yellow, everybody commented that I looked and seemed a lot better in myself, the extreme soreness around my mouth that had been chronic for about a year completely cleared up, I was less breathless, my skin was no longer dry, the pins and needles in my hands and feet disappeared, I no longer had the cystitis like feeling, I was less sluggish, everything felt so much easier and all my senses started to come back (I no longer felt dull). My speech was easier.

I had my final 2 loading doses and things improved even more, although I am still getting the angiodema, usually triggered by things like perfumes and sprays. I also still feel slightly dizzy and still have the odd memory lapse...but it's early days. Also I still have some gynaecological pain.

I went back to my GP. At my surgery there are around 20 doctors, and I have seen different ones at various stages because I just tend to see whoever is on, which I now realise is probably a mistake as they don't get to see how you're progressing ie getting better or worse etc. The doctor who prescribed me the B12 injections has now left as she was only there temporarily and has now gone back to work at the hospital. So the GP I saw a few days ago is someone I have never seen before...and other than my notes on the screen doesn't know my history. My reason for going to the GP is because the immunologist also pointed out that I have an iron deficiency and need to see my GP for iron tablets in addition, I thought that probably explained why I was still dizzy...also my angiodema is still pretty bad so I needed more advice on how to manage that. I went in and explained, and I mentioned that I have recently been diagnosed with a B12 deficiency and had been feeling a lot better since starting the injections...but obviously not completely as it's early days and then I went on to ask about the iron defiency etc...I was reailly shocked by what came next...she has sent me for another blood test for iron and folate levels and then said that she didn't want me to have any more B12 injections as they are for people who cannot absorb B12 and that I should be getting it from my diet (after years of sheer hell with what I've been through and how the injections were the only thing that have helped me!). I tried to explain all of this...but it was like I was up against a brick wall...I feel as though I am back to square one...symptom wise I am okay at the moment but if they stop my injections how long will that last...I really feel they are the answer (to which she replied "Well they don't work overnight" ...but they won't work at allif they take me off them??? I was so shocked that they have done this...it was the last thing I expected and I feel that they have taken my hope away....I was feeling so positive before this...She said as my intrinsic factor is okay I shouldn't need them...I tried to explain what Martyn had told me about the test only being 30% accurate but wasn't able to put it accross very well as my angiodema was now really swelling up and I felt like I needed to go to A&E or at least get out of there quickly and get my antihistamines...I think I reacted to the perfume I sprayed on myself before leaving the house...I've vowed to stay away from all perfumes and body sprays for a while now...

It had taken me so long to get those injections...especially as my intrinsic factor was okay...and I'm at a loss as to what to do next...I've spoken to Martyn again, who suggested I see another GP at the surgery...I just don't know what I'm going to do now...I've tried diet...I've done that for YEARS!!! And I took a supplement for nearly 10 years....and the colbalamin for a few months...none of it has worked, the only thing that has was those injections....why give me hope and start to make me better and then take the treatment away...it doesn't seem fair...I feel as though I can't even do anything in the meantime to help myself ie B12 sprays or patches...because it will alter the results and then they definately won't give me the injections back....I don't understand...it's a harmless vitamin...yet they dole out antidepressants at the drop of a hat which have far more side effects and are a lot more expensive for the NHS. I thought their reluctance was to do with money....but B12 is relatively cheap and anti-depressants are a lot more expensive???

The thought of having to go through another year feeling like I did last year with that foggy retarded feeling in my brain (that has now gone thanks to the injections) is unbearable to think about...I thought I'd never feel better but I began to feel LOADS better with the injections...I don't see how I can get better without them as diet and tablets make no difference to how I feel...but the injections do....Everyone has been so supportive at work and people have told me that once people start the treatment after a few months they feel better than they've done for years....but now I can't even have the treatment. In the past I came across so much judgement from people (in the days when I didn't know what was wrong...and I'm SO glad that I know what is wrong now)...

I just feel so angry and upset about it all...and I feel my hope for getting better has been taken away. I was so glad that I'd improved so much and that it was REALLY helping....and now they've cancelled my prescription....
Last edited by Hayedwards on Wed Jan 18, 2012 5:53 pm, edited 1 time in total.
Hayedwards
 
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Re: Ceri's Story

Postby kimks mom » Sun Jan 15, 2012 3:26 am

Hi Ceri,

Doctors can be so silly at times. What has happened to you keeps occurring over and over again by doctors who have no knowledge of B12 deficiency.

Do you have a copy of all your blood tests that show your B12 getting lower and lower. If you do, this is something you should show the doctor who stopped your B12 injections.

Do you eat meat and dairy products. If so, then your B12 level would not have continued to go down and copies of your test results would support this. You could go back to the doctor and hope you get a different doctor.

Don't let one doctor's opinion stop you from getting the treatment you need. You can start by printing off the links Andrea gave you about the Scottish Parliament..get a file together with research articles. The topic below has some excellent articles that can help you:

viewtopic.php?f=2&t=11358

If your doctor won't listen to you perhaps your Member of Parliament will listen. Some of our members have had help from their Members of Parliament.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Ceri's Story

Postby BeeNumber12 » Sun Jan 15, 2012 4:26 am

Well, I just lost my post to you, too!
I remember how awful I felt when I was told to reduce frequency of my shots: it's pretty frightening to think of returning to death's door! I have some little idea of how you might be feeling just now. Let me tell you the best thing I ever did for myself. I learned to self inject my own b12. My Naturopathic doctor taught me. Once you learn, you will never have to fear any doctor/gp opinion again! In the event a cooperative doc is not to be found, self injection is one option.

viewtopic.php?t=10103

Dorothy

PS. It's possible to type/save your replies in a word document then copy it over to post it on PAS.
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: Ceri's Story

Postby Hayedwards » Sun Jan 15, 2012 4:41 pm

Thanks for your reply Pat....I reallly hope I can get this sorted out...I've been eating meat for the last 10 years and I've always had loads of dairy products...it's not dietary, I've tried tablets...I'm not absorbing yet...but THEY say I am cos of the stupid instrinsic factor test and make me feel like a hypocondriac when I try to explain otherwise...I originally thought I had depression so every time I go to the doctors that flashes up on the screen and they put everything down to that...even though they don't know me...then they are surprised because there was no trigger for my "depression"...I had this the whole time...pernicious anaemia causes depression and it's natural to feel depressed when your physically not well with no answers and it gets worse and not better and goes on for years...
Hayedwards
 
Posts: 96
Joined: Wed Nov 23, 2011 9:44 am
Location: England

Re: Ceri's Story

Postby Hayedwards » Fri Jan 20, 2012 7:34 pm

So....I went back to see another doctor the other day and I've got my injections back for the next year and a bit, which I'm really relieved about...however he is still not convinced that this is what the problem is (although I am). But obviously it has left me confused. My B12 levels were 154, I had all the symptoms associated with low B12 or pernicious anaemia...plus a few extras...and when I started my injections most of the symptoms have been a lot better...but I'm confused because my intrinsic factor test was okay (although I've spoken to Martyn who says it's only 30% accurate as they only test for an antibody not actual intrinsic factor...so I COULD still have pernicious anaemia)...but I've been told I'm the wrong age for pernicious anaemia...and that my levels aren't low enough to suggest pernicious anaemia...but if that isn't the problem then what is? Really confused...but relieved to have my injections back...and I want to stay on them for as long as I can....I'm also on iron tablets.

Dorothy...thanks for your response...I would learn to self inject if I could...although I'm not keen on the idea...I'd rather have it done by a professional (don't quite trust myself to get it right...also still not 100% sure this is what the problem is...although I do know B12 makes me feel HEAPS better!!!!). Also I live in the UK and you can't just buy injectable B12 over here (I know you can in America, Canada etc)...so it's not an option at the mo.
Hayedwards
 
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