Personal Story

Aileen Stoneham

First symptoms started with headache, nausea, a sore mouth, excess saliva & loss of taste, tingling & burning in my fingers & feet, brain fog & poor concentration, menstrual problems, diarrhoea, irritability & personality changes, impossible to live with, fatigue, shortness of breath, dizziness, pale face, loss of appetite, weight loss & stomach problems, hair loss & brittle nails, sleep disturbances & balance problems. I ended up with time off work, at the time I worked in a nursing home doing shifts. My manager at the time suggested that something major was going on with my health because of all the symptoms. I ended up being off sick for a few months as the symptoms made me house bound and very sleep deprived. My parents ended up taking me to see the GP several times and to A&E a few times too. I was in my 20s at this time and was confused and frightened with what was going on with my body especially when more symptoms occurred.

My mum was really worried and concerned with the array of different symptoms I had. We were all frustrated and annoyed with being fobbed off by the GP. Mum couldn’t understand why the A&E department doctors could not diagnose me. My dad couldn’t understand why I wasn’t eating (I couldn’t my mouth was so painfully sore), he also couldn’t understand why I was not at work and to him I was just lazing around. My friends were worried about me, why was I not getting a diagnosis, but still kept asking why I wasn’t coming out. My colleagues at work didn’t understand, thought I was a waste of space keep going off sick.
GP wasn’t sure what was going on, thought it was Crohn’s Disease, so I got referred to a gastroenterologist. I had a barium meal scan. The results were inconclusive. I was being sent for blood tests and iron levels (came back very low), so I had another taken for B12. This came back extremely low, so I was referred to a haematologist. It felt that I wasn’t taken seriously at first, then when the GP started to get the results he started to get concerned.

Initially blood tests by the GP. Referral to a Gastroenterologist to rule out Crohn’s, then to a Haematologist, which took months. Finally got to see the Haematologist, I was under the consultant for over two years until the decision was made to give me B12 injections there and then at an outpatients appointment, after a few weeks the symptoms started to subside and I felt like a different person. At my first appointment I had a full MOT, I remember being physically examined from my mouth to my toes, more blood test were taken. I felt at last I was being taken seriously and that I could tell my family and friends I actually have something wrong with me as they thought I had Megaloblastic Pernicious Anaemia.

It took a few years of going to clinic appointments at the hospital literally going backwards and forwards. More blood tests each time, I was on the border line of having MPA. It was a stand in doctor that I had an appointment with after 2 years of attending this clinic, I was asked why I hadn’t been given B12 injections, his guess was as good as mine! I was given my first injection there and then and asked to attend the clinic in a months’ time. After a few weeks my symptoms started to subside even more, I could eat soft foods to start with as I still had blistered tongue. The tingling in my hands & feet subsided. I was more confident in moving about as the dizziness subsided a little, my clumsiness subsided a little too. The other symptoms started reducing, little by little, I started to improve. I was also diagnosed with folate deficiency for which I take folic acid for life along with my injections.
I’m currently having Hydroxocobalamin 12 weekly, have been for over 25 years now, and put up with what I call flare ups before my injection is due. The symptoms start to come 3-4 weeks prior and are just like I had before I got treatment. I had been suffering like this for many years until l seeked help from the Pernicious Anaemia Society, I now have started to have my B12 at 9 weekly. I felt I was missing weeks of my life each time the B12 was due equating to more than 12 weeks of my life a year that I was house bound. Now I can gain those weeks of my life back.

The cause of my Pernicious Anaemia wasn’t diet related as I loved eating meat and still do. There was talk of doing a Schilling test to determine vitamin B12 absorption, but I learned it is no longer used. It was decided that from clinical tests, examinations of me physically and blood tests pre and post B12 injections, that my body wasn’t able to absorb vitamin B12 due to lack of intrinsic factor in the stomach. I got diagnosed with Pernicious Anaemia a type of Megaloblastic Anaemia. Its an autoimmune condition that affects your stomach, your body’s natural defence system that protects against illness and infection. It attacks your body’s intrinsic factor or cells of the stomach lining. I also have lack of folate, the red blood cells don’t develop normally being large and oval shaped, not round like normal.

Life’s better now that I’m having my B12 injections 9 weekly, thanks to the PAS. The symptoms I get on a flare up before my injection is due subside earlier, so I now can carry on life as was before this all occurred. The flare ups are like re living being housebound all over again. Getting most of the 12 weeks of my life back means so much to me.

I do have permanent damage from not getting the B12 injections in the first place over 25yrs ago, they vary in severity and consistency. I have infertility & menstrual problems, pins & needles in my fingers & toes, loss of taste, poor concentration, loss of appetite & stomach problems, brittle nails, atrophic glossitis, pallor & fatigue, depression and hair loss. Until i started combining this list I didn’t realise that I had so many long term symptoms. Some GPs I encounter still do not acknowledge them as PA related.

No one in the family before me had been diagnosed with PA until my grandad was in his 70’s, he was put on tablets to start with then into B12 injections. I never knew the type of PA he had, as he never talked about it.

When the symptoms started occurring, I had a drastic change to my life as I couldn’t function normally. I was physically and mentally affected in a variety of ways prior to treatment. I gradually got worse from trying to hold my caring job down and being off long-term sick. After treatment I got better as the symptoms decreased and some even went away. I gradually got stronger by eating, drinking and gradually exercising more to be then able to return to work. The B12 injections were certainly a life changer for me, even though I waited 2 years for them to start. A normal life was gradually coming together for me.

If I’d known what I do now when I was going through hell from my symptoms 25yrs ago, I would of insisted for a quicker diagnosis and treatment. I didn’t have the support of the PAS at that time. You do! So use their expert knowledge and advice, they are there to help us. Keep strong mentally so you can fight for your right to get a diagnosis and to get the right treatment for life. Keep banging on those doors to get the right to live a good quality of life.

As I’ve said the PAS helped me to get my B12 injections earlier so I didn’t continually physically & mentally suffer and loose 12wks of my life each year. I first found out about the Society by researching up PA and came across them about 5yrs ago, I went to a local meeting and got hooked in by the tenacity of everyone there. So many stories similar to mine. So I kept in touch with the PAS receiving the newsletters and being an armchair ambassador, sending donations when I can and the Society is in my will also.

It was when I got a firm “no” for the third time from my GP to have my injections sooner I contacted the PAS for help, I got a supportive email in reply, I was told not to give up, and with their help I will get my B12 earlier. I was advised what to say and to quote the NICE Guidelines too. After a few more emails I did an e-consult for my GP, I quoted the PAS had advised me and with a bit of debate with them, he agreed to 9wkly B12 Injections. I asked for this to be put in writing so I had it as proof, which he did. The importance of the PAS has been invaluable to me, without their help I would be suffering still. They helped with the appropriate advice and how to word what you need to say to your GP. The charity has helped change my life for the better, I can’t thank them enough, the personal contact via email gave me the confidence to fight for my right. Thank you from me and my family. Please use my story as encouragement to get help for diagnosis or change in treatment from the great team at the PAS.