Hi...I'm desperate for answers at the moment, as I'm in a really bad way with some really confusing health problems. If anyone can help me to shed any light on all of this, I would be so grateful as I have no idea where to turn next for answers. I have been unwell on and off for years (the last year being the absolute worst!) and it is really ruining my life.
As a kid I was very healthy and never really had anything wrong with me apart from the occasional cold, tummy bug, ear infection and normal childhood illnesses that everyone gets. I did suffer from eczema from the ages of five to eleven which I outgrew.
When I was eleven I began to suffer from frequent migraines, which seemed to settle down by the time I started my periods. I also went through a phase where I was low in energy, would become breathless when climbing the stairs and found it difficult to concentrate. I remember taking iron tablets around that time, and someone mentioned that I should take B12 as I was vegetarian, so I did and I felt better.
Between the ages of twelve to seventeen I was healthy.
At seventeen I began to have frequent throat infections, ear infections, constantly catching every cold and flu bug going, I could be low in energy and had mild IBS. I put this down to the stress of college and working in a nursery, and catching things from the kids, but it did seem that my immune system was low as other people didn't seem to get ill as often as I did.
I seemed to get past this and for the next year and a half at eighteen and nineteen I was healthy.
Then at nineteen I had a virus which they think may have been glandular fever, I also had a chest infection with it, and my throat infections then became more frequent, then chronic, so I had my tonsils removed which sorted out that problem. I also had labyrinthitis around the same time, and was left slightly dizzy and fatigued for quite some time after that. All of this went on for around seven to nine months. It was mentioned to me that I was also slightly low in B12, so I took B12 tablets again and thought nothing of it, I seemed to get better. I didn't know about PA or problems with absorbtion at the time, so had no reason to think I had that.
For the next year and a half to two years at twenty and twenty one I was healthy.
Then in my early twenties I had really bad gyno pain, that went on for about four months with no real explanation. I had a lot of tests which were inconclusive, I took painkillers and anti-biotics and it seemed to go away by itself in the end. I also had a bad water infection around the same time. Not long after this I had a phase of getting stomach upsets and then migraines. I felt rubbish with all of this for about two months, then it all just seemed to settle down. Not sure if this is relevant but I also had a period of anxiety and OCD, which is something I suffered from all through my twenties.
For another two and a half years between the ages of twenty two to twenty four I was healthy.
At twenty four or twenty five I began to have neurological symptoms - dizziness, brain fog (which became quite severe), pins and needles down the one side of my face and I also had memory problems and could feel quite fatigued. I also became extremely depressed and my OCD and anxiety became really bad. I was referred to a neurologist and had a CT scan, two MRI scans (and they followed it up two years later to make sure), an EEG and an ECG as I occasionally had heart arythmias around that time. I had a lot of blood tests but nothing conclusive. In the end they put it down to either anxiety (I knew it wasn't), migraines (but it was there all the time) or chronic fatigue (do you get neuro symptoms with CFS?)
Between twenty five and twenty eight, I just got on with my life. As long as I looked after myself I was reasonably healthy, although I could feel a bit rubbish from time to time with things like bloating and yeast infections, but nothing major.
At twenty eight my stomach symptoms came back, I was having frequent bouts of diahorrea, stomach pain and bloating and, some of my symptoms are quite personal, but I began to get really bad soreness (where the skin would actually come away) of my back passage (sorry guys) almost like some kind of ulceration. I had a persistent water infection and my vagina became really sore and really dry. I could no longer have sex and my libido was non-existent.
All of this seemed to pre-cede me becoming tired and run down, dizzy, the brain fog from 2007 came back and I was now starting to have memory problems. People were starting to notice that I was pale and my lips would break out and become visibly sore.
At twenty nine, all of this continued, and got worse. I now had soreness of the tongue and lips, really bad speech difficulties, my skin was extremely uncomfortably dry, I continued to have water infections, my hair was falling out in the shower, and I now had a pins and needles like burning sensation in my hands and feet. I continued to have what felt like a water infection. I was tested for everything under the sun several times and was backwards and forwards to the GP constantly that year. They couldn't find anything wrong. I looked jaundiced.
Another development was when I began to get skin rashes and angioedema, which at first I thought was food allergies. I was referred to an immunologist who diagnosed me with idiopathic angioedema as the result of my body being really run down. I was then diagnosed with a B12 deficiency (my level was 154), a vitamin D deficiency and I was also told that I was low in iron and folate.
I had B12 loading doses, and took vitamin supplements for vitamin D, folic acid and iron and within two weeks I felt AMAZING!!! All of my symptoms disappeared. I was so relieved as I thought I had finally found the answer. At this point I was just about to turn thirty, so it felt like I'd been given a second chance at life after so much of my twenties being blighted by ill health!
I was given injections every 3 months after that, but found that they didn't last very long. I was taken off them as I didn't test positive for intrinsic factor anti-body and my levels were okay. Pretty soon I was back to square one. All of my symptoms were back and I couldn't get the GPs to let me go back on the injections. After doing a bit of research online I discovered how many other people were having similar problems. So I contacted the PA society and had a consultation with them. I learned to self inject. I was given methylcobalamin to begin with and self injected every other day until no further improvement. The methyl didn't do a lot for me, so in May 2012 I switched to hydroxy (which is what I'd had at the GP surgery) recommended to Goldpharma by other sufferers who also self inject. I did this every other day and within weeks I felt really healthy again.
2012 - 2015 I w as really healthy most of the time although I did have a couple of flare ups of my stomach related symptoms and the ulceration I mentioned before. This would go on for a few days to a few weeks, then settle back down again as though nothing ever happened. My stomach issues have never really been properly investigated, although I have had blood tests for Coeliac, Chron's and Colitis - all non conclusive.
Then in Feb 2015 I began to have symptoms which I think may have been low pottasium, I kept on going faint, I felt weak, my balance and co-ordination was not good, I had head pressure, neck pain, frequent urination and difficulty thinking clearly. Really scary stuff. I also had a water infection.
In March I stopped the B12 and just hoped I stopped needing it.
April - September 2015: I felt well
October: The tiredness and B12 related symptoms came back, so I gave myself loading doses. The GPs don't feel I need B12 so I knew I'd just have to do it myself. Again I had side effects like muscle weakness, dizziness, lack of co-ordination and head pressure. The GP's don't approve of me self injecting, it was something I started out of desperation and something that worked well for me for over three years. However it does scare me a LOT that I'm doing something against medical advice.
By December the side effects wore off.
December 2015 - May 2016: I felt healthy
May 2016: The tiredness came back as did the stomach symptoms and the ulcers. I self injected again, and if anything I felt worse. My whole body especially my lips. hands, feet and vagina felt like they were drying out. I also had neck pain and felt tired and lethargic. I can sometimes get a racing mind as well when I'm very lethargic or tired with it all. I suffered with this for the next couple of months.
June 2016: I built up my pottasium levels and gave myself a few more injections at the end, and they worked.
July - September 2016: I felt healthy
October - December 2016: The tiredness came back. I went back to self injecting, but found that when I did I was going dizzy and faint, having neck pain, head pressure and difficulty thinking clearly. I felt drunk and I actually did faint a couple of times. I was inconsistent with the B12 as I had no idea what I should be doing. The worst was I was now having shortness of breath, which was quite severe and pretty terrifying.
Jan 2017: Loading doses again
Jan - Apr: Healthy
Apr: Flare of of stomach symptoms and ulcers. Tiredness came back. Self injected again and it didn't do much.
May/Jun: Tried more B12 but now feel worse than ever. Has caused me a lot of problems at work, they are insisting I should see a haematologist or neurologist but all my GP does is blood tests, and doesn't think there is anything seriously wrong. I always come out feeling like a hypocondriac despite feeling at death's door. I have recently been told that my vitamin D is extremely low and that I'm also slightly low in folate, but my B12 is sky high and I should stop self injecting (to be honest, I am now terrified to touch B12 again as I've got in such a mess with it). They feel I should never have started self injecting in the first place.
Work are expecting me to have all the answers as it has affected me at work in terms of performance not time off (as I drag myself in no matter how I'm feeling most of the time) and I don't know what to tell them.
I wish there was a less long and complicated way of explaining all of this, but there doesn't seem to be. I am now thirty four and feel that I've had my life ruined and taken from me by this. I haven't had a proper career, it has affected me in terms of relationships, my long term relationship in my twenties didn't survive mainly because of the problems that all of this has caused me, and I find myself backing away from other potential relationships because of my health and how it affects me. I'm at the age where my biological clock is ticking and I wish that I had have just got on with having babies when I was younger, before my health got so complicated as I feel it would be dangerous or impossible to have them now with all of my health problems being as bad as they are. I'm now at the point of starting to accept I will probably never have them now and I would make a really good mum.
It's also causing me to want to leave my job as I'm under a lot of stress there as wel because of my health, but can't afford to do that, even though I'm really unhappy. I really just don't know what to do.
I've also become reclusive as due to the faint feelings etc I am reluctant to go too far from the house, and I often have to turn things down socially as I'm just too unwell, so a lot of the time feel I'm letting friends down. I just can't have a normal life because of all of this. I no longer drive because of it, and won't go abroad.
Any help or advice would be appreciated, so sorry this is so long.