Dystonia?

**Warning if you hate feet, photo's of feet this post is not for you"

I have had painful spasms in my feet for as long as I can remember, for a long time I have just assumed that it is part of the Ehlers Danlos Syndrome I have and just put it down to that but I have always felt it was odd that it was only really my feet that were effected. EDS is a connective tissue disorder and connective tissue is everywhere throughout the body, so in reality more parts of me should be going into spasm than just my feet alone. After a particularly bad week with it back in late February / early  March ( before the world went mad ) I ended up consulting Doctor Google to see if there was an alternative explanation (differential diagnosis ) for what was happening, low and behold there was Focal Dystonia.

When I worked out what the issue was it was clear that the UK would soon be heading for lock-down and I didn't want to be in or around a health care setting for anything that wasn't urgent and when I say urgent I mean life or death. So I decided that when the madness had passed I would seek medical help but this evening ( I'm talking about Tuesday in Wednesday ) I have been in so much pain with the muscle spasms / contractions I am kicking myself that I didn't do anything about it. Not that there is a cure but I may have had better medications here to cope with or stop the contractions. When it is as bad as this the pain is no longer just in my feet but travels up my calves along the ligaments and tendons. I can feel the spasms moving along them until it hits my feet and then a wave of pain starts as my toes begin to distort themselves, in rather bizarre ways. I have no control over it at all. I can grab my toes, massage my feet but the minute I let go they once again return to their painful contractions. Often whilst I am attempting to force them out of their distortion I can feel the pain building up again which means another spasm is on its way.

There is no stopping it as the minute I let go my toes move without any conscious effort from me. On a bad night, it is almost always a night I get this, although when I have a very bad night during the day I can feel less powerful spasms on and off all day like I have today, nothing will stop the spasm. Massage will only provide a very short period of relief often just seconds. The only thing I can do is ride it out, apply heat and hope that it eventually goes away.

I have found it very difficult to capture images of my feet as the spasms can be very subtle. Unless you know what you are looking for it can be difficult to see why I am in so much pain. The spasms are always focused around my toes but the pain is felt throughout my feet. On occasion you can see the tension in the skin on my foot as my toes are trying to move in two separate directions. Almost always my big toe and the toe next to it want to go one way whilst everything else goes in a different direction. Spasms have been so strong in the past they have dislocated my big toe ( agony). I have raised this with doctors before who just look at me as if I am a sandwich short of a picnic. Where as now after checking it out on line there is a very real possible cause for what has been happening. I managed to take some photos this evening - my feet are swollen due to the amount of salt tablets I have to take and the toe nail on my big toe is a mess due to having the sides removed over ten years ago due to recurrent ingrowing toenails so my apologies. But without the photos you may not "get" it.

On this photo my big toe is pulling out and down, at the start of a spasm.

Just a few seconds later my big toe and the one next to it are twisting and pulling forward whilst the remaining three toes are curling toward the sole of my foot.

In this photo taken a few seconds on again you can see the big toe and the one next to it looks like I am flexing it forward and curling the other toes back. 

As I said it is hard to capture especially as it mainly only shows in my toes and make not look that strange to other people but the pain it produces is off the chart.

I managed to get this short video

The gasping noise is me due to the pain the movements are causing me. This was taken at around 9pm last night and it is now coming up to 2am and my feet are both throbbing still from the pain this 30 minute episode caused me. The pain and weird feeling I get afterwards extends all the way up to both knees. It is always my left foot that is affected the worst and whilst this was happening my right foot was joining in to a lesser extent.

I ended up having to take some pain relief and applying a heat pad to relax the muscles and to stop the contractions. Once an attack is underway I have to be very careful how I move my feet for several hours afterwards as it will trigger another round of spasms. Although to be honest it doesn't matter how I move if they want to spasm they will I have zero control over them.

I have noticed it gets worse if I am tired / stressed / unwell ( more than normal). I have been pushing myself too hard lately and need to drop down a gear, which will be hard for me to do as I feel guilty when I don't get all my jobs done.

People have suggested that it is low B12 levels that are to blame for these spasms but as I self inject on a regular basis due to my deficiency being under treated by the NHS, I really don't think that this is the cause. Plus I have some many neurological things going on that I really wouldn't be surprised if it is all part of some yet unexplained genetic syndrome that I have.

So for the moment I will just try to capture as many images as possible showing the distortions / muscle contractions so that when the situation with Covid-19 resolves or just things go back to a new normal I can show the doctors who treat me.

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

"Can you hear me?"

I am getting increasingly frustrated with not being heard.

I have a good doctor but there is one symptom of mine that whenever I bring it up is not acknowledged or I feel is disbelieved. Everything else I discuss with him is accepted as part of my condition yet this simple seven letter word is just left hanging in space and I am fed up with going over the same old ground in an effort to be heard and acknowledged.

This symptom isn't anything crazy it is well documented as part of Ehlers Danlos Syndrome and Dysautonomia but it is dismissed out of hand whenever I dare raise the subject. All I am trying to discuss is the bone crushing level of fatigue I suffer from after leaving the house for medical appointments or for any other reason.

On leaving the house I am hit with fatigue, its been going on for seven years. A medical appointment can leave me in bed for hours if I am lucky and most of the time days. Its not just the fatigue that is an issue but also it makes all my symptoms worse. I have increased pain due to the Ehlers Danlos Syndrome and the Dysautonomia makes my autonomic nervous system go screwy. A simple 20 minute appointment can leaving me feeling like I have been run over by a car and I simply don't bounce back.

Most medical professionals that I try to discuss this with either pretend that they haven't heard me by changing the subject or make me feel like I am exaggerating my symptoms. Let me tell you now I am not making this stuff up! If I could go out everyday I would, I don't choose to be a prisoner in my own home, my body is making me that. I don't mind suffering the consequences of the punishment my body will dole out if I am having a good time however medical appointments are not on my list of fun things to do. I would rather spend my energy actually having a life and doing normal things. The only way I can do this is to stick to a strict routine in a controlled environment where my senses are not over stimulated and my frayed autonomic nervous system doesn't feel like it's under attack.

Also I find that doctors do not calculate into the equation,  the travelling times to appointments. My doctor wants me to go to the next town to have physiotherapy on the NHS. What he has failed to appreciate is that on a good day that is a 20 minute journey each way with a 30 minute appointment. The physiotherapist will want me to attend once or twice a week. That's lovely but my body disagrees. If I go just once a week it will take me the rest of the week to recover, going twice a week means my body doesn't recover and it sends me on a downwards spiral where I become so ill I can't get out of bed for months. The doctor and the physiotherapist can not understand my sudden deterioration, I then have to end the physiotherapy because I am too sick to attend.

How do I know this will happen? Because I have done this before. I tried to play the game and attend the twice weekly physiotherapy sessions. I ended up in a worse condition than I was before I attended. It's not just the travelling and the appointment that is the issue. If you end up with a physiotherapist that can't get their heads around the autonomic issues and demands you increase your walking by 10% each week you are on a hiding to nothing. It doesn't matter how much you tell them about your condition they just don't hear you. It begins to feel like they think you like using a wheelchair etc. You aren't then just using energy travelling and attending the appointment you are wasting energy on a person who refuses to listen to you. If they can't understand the danger with getting someone who has orthostatic intolerance or faints without warning  to increase the length of time they spend walking then what's the point? I am thoroughly sick of it.

When I explained to my doctor that the physiotherapy was making me worse I felt ignored. I was told that I was just going through a rough patch and once through it I could start again. I never emerged from that rough patch and my conditions steadily got worse.

Don't get me wrong I like my doctor there are many things that we see eye to eye on and he is my go to guy. He just fails to appreciate the havoc my body creates when made to leave my home. He didn't get it when I had to have 6 vitamin B12 injections over two weeks, that this would put me in bed for days. I asked if the district nurse could come and do them I was told that as I was  not strictly housebound that I would have to go to the surgery. I understand that the District Nurses are extremely busy and have many patients to see but this meant for the whole two weeks I rarely left my bed. The nurses I saw at the surgery could see with each session my health was deteriorating and were furious. I couldn't understand either why I was not being allowed to self inject when I already inject octreotide (a far more dangerous drug that vitamin B12) everyday. It made absolutely no sense. Unfortunately its something my doctor didn't see so obviously its just a figment of my imagination.It's incredibly frustrating.

This situation with being disbelieved has happened again this week. I needed to ring my GP about increasing my slow release morphine on the days when my back is bad. That was no issue at all. He then asked me how I was, I explained I had seen my neurosurgeon, I read him the MRI report and then told him I had been in bed ever since the appointment (at this point it had been 24 hours and for a lot of those I had slept). I swear to god I could hear his eyes rolling! 

I think some of the problem is that when I see someone and it doesn't matter how ill I am (unless it's a situation like in June where the temporary catheter was blocked and my bladder was in spasm) I will be bright and breezy because I am genuinely happy to be interacting with another human being other than my husband. I can go weeks without seeing anyone but him and although obviously I love him very much, it's nice to have some social interaction. The fact that as soon as the interaction finishes I go back to bed or back to sleep is something they don't see. I really wish they did. 

Sometimes I wish I could pull off a dying swan act just so they would appreciate how sick I am but I just can't, it's not me. Years of dealing with colleagues and the general public has ingrained in me a "happy face" and a pleasant demeanor when dealing with people. Very few people see the real me, the days when I can't cope with all the crap that's being thrown my way and I just want to cry all day everyday. I know through my immense dealings with the medical profession for them to see me like that would mean they would blame it on depression and then it would be an uphill struggle to get any symptom acknowledged as it would all be blamed on that.

I am dreading starting my spinal rehabilitation physiotherapy due to the fact I don't know if the physiotherapist is going to believe me when I tell her I can't come every week. However at least this time the journey is only 5-10 minutes away depending on whether we get stuck behind a tractor or not. Plus this time I am paying for the treatment myself which means I get a bigger say. I am going to be printing off and taking with me medical papers on Dysautonomia and Ehlers Danlos syndrome for her to read. I hope she does otherwise I will be saying to myself yet again "can you hear me?" when the subject of my fatigue is ignored.

Anxiety

I have always been quite an anxious person, culminating in an anxiety overload and a major bout of depression back in 1999. It took me a long time to get a grip of them through Cognitive Behavioural Therapy and pharmaceutical means. For a very long time I had considered anxiety and depression a thing of the past and then Friday 8th August my old foe anxiety / panic attacks came back with a vengeance.

Those of you who are regular followers of my blog know that I have been having treatment for B12 deficiency. Anxiety and depression can be a symptom of low B12 levels. That wasn't the case with me, my symptoms were pins and needles in my hands and pains in my legs. Both symptoms were worse on my left hand side.

To treat the B12 deficiency I had to have injections every other day (or as close as I could) of B12. My initial treatment was limited to 6 injections which doesn't follow any of the best practice guidelines but seems to be how those who are B12 deficient are treated in the county in England where I live. It has meant enormous upheaval for both myself and my husband getting me to and from appointments. Not helped by the fact my dogs have a voracious appetite for furniture if they are left alone. Some days my husband has been able to come with me, other days I have had to take a taxi alone.

Fridays injection would have been my fourth with two more scheduled the following week. I was going to take a taxi down to the surgery and if possible get one back home. All was going well until a few hours before I was going to leave for my injection. Out of the blue I was filled with a sense of panic. This is quite unlike me and the more I tried to calm myself down the worse it got. I simply did not want to deal with people or to leave the house. I had no knowledge of what the perceived dangers that lurked outside were, I just knew I could not go. As silly as that may sound to people that have never experienced that kind of thing.

The night before had been filled with nightmares, I had slept but on several occasions I was woken up by the sheer terror of what had played out in my dreams. The first dream I remember was I was involved in a plane crash. I am terrified of flying a phobia that has got worse over the years, so for me to be on a plane in my dreams is quite laughable it just wouldn't happen. The next dream was my house was enveloped in a swarm of bees. I was alone in the house and no matter how quickly I ran from room to room shutting doors and windows the giant bees (they weren't normal sized ones) threw themselves against the glass. I was filled with panic as I searched every room for my dogs trying to ensure their safety. As the swarm entered the house the dream obviously became more than I could handle and I awoke (again) with a start. Not a pleasant night....which has been followed with a night of insomnia what joy!

I mentioned my vivid dreams to my husband the following morning who remarked it was odd that I had suffered from nightmares as I normally never remember my dreams. Looking back now something was obviously troubling my unconscious mind. The plane crash was obviously my overly acute fear for my safety. It could be suggested that the plane some how signified the medical situation I was going to be in the following day but I think thats a stretch. The swarm of bees I think signified the danger of the outside world. Shutting doors and windows was a way of protecting myself from that danger. Who knows these are just the ramblings of someone who hasn't slept so far tonight. Its coming up for 2am in the UK as I write this.

As I said earlier I felt fine in the morning and really didnt give the dreams anymore thought until discussing the days events with my husband later in the evening. 

I loath feeling anxious about nothing specific. I couldn't tell you what the threat outside was that so filled me with dread. I sat on the sofa for over an hour wondering what the hell to do. I didnt want to miss the appointment, mess the dogsitter around or give in to my fears. No matter how hard I battled I just couldn't get in control of my fear. In the end I rang my husband at work something I try and avoid doing as personal calls are frowned upon. I talked through what was going on in my head. 

Luckily my husband has also suffered from panic attacks and anxiety in the past. He asked me if I knew what I was afraid of, told me that cancelling wasn't the end of the world. He would now take me to all my appointments and we would manage. It was so nice to hear his calming voice at the end of the phone. He asked me if I wanted him to come home, which I didnt need because the anxiety was about leaving the house. As long as I remained inside these four walls I felt safe.

By the time I had called my husband and cancelled everything else I was exhausted and slept for 2 hours solid. Its probably why I am unable to sleep tonight. I felt a wave of calmness start to wash over me and when I woke up I felt like I was back to being me again. The whole thing had seemed very odd and surreal. I have had that kind of fear before but not for many years and it troubled me as to why it had suddenly raised its ugly head again.

CBT taught me to analyse and explore my feelings so I spent the rest of the day trying to figure out what had caused this reaction. My husband had already told me during my call to him he felt it had been triggered by a mixture of tiredness and the fact that I so very rarely go out alone. Plus I was going out alone into a medical setting. Medical settings always trigger an element of fear but I can normally control it. The more I thought about it the more I had to agree with him.

For normal people going out by yourself is something you do without a backwards glance. Before I got sick I would go out regularly unaccompanied. I would drive to see my family and friends. I would pop into town to do some shopping. Leaving the house by myself was not an issue. Since 2008 I have very rarely left the house alone. It has almost become that my husband is now my safety blanket, or anyone else who is with me when I leave the house. I feel very vulnerable now when I am in the big wide world. Before I felt I could handle myself in any situation. Now the world is full of fear for me. Fear that I could pass out or fall whilst out in public. Fear of being abused because of my disability. Fear that if someone should physically attack me I wouldn't be able to fend them off. Things I rarely considered when I was well unless I was walking in an unlit car park late at night going back to my car.

It is not my fear that stops me leaving the house it is my physical disability. I need a wheelchair if there is going to be any walking involved or if there will only be a tiny bit of walking involved I can get away with crutches. Crutches come with a price though as my shoulders, elbows and collar bones complain for days on end afterwards. So with my limited mobility I always need someone with me. Someone to push my wheelchair or someone to drive me right to the door of wherever we are going.

Going out accompanied I never have any fear. I don't feel vulnerable or fragile or less of a human being. Alone I feel all of those things.

In the last few weeks I have been out of the house more times than I have been in months. I was ok the first time I went out alone but I just couldn't do it Friday. I am angry with myself for being such a coward and giving into my fear. I am annoyed that I didnt put my CBT into practice and try and rationalise the fear. 

The problem is CBT only really works if you know what specifically it is that you are afraid of. That way you can explore the issue, rationalise your fear, work out "well what's the worst thing that could happen?", how you could prevent the worst thing from happening and how realistic it is for it to actually take place. When the fear is unspecified you don't know what the worst thing is. There was no voice in my head telling me what I was afraid of. I just knew I didnt want to leave the house and the thought of it was making me anxious to the point of being tearful.

Sometimes I really don't appreciate all that I have been through since getting sick. I dont give myself enough credit for achieving the things I have. I am determined not to let this little set back make it impossible for me to leave the house again. I will go out alone again just not for a little while whilst I work through what the possible triggers were and why the fear was so all consuming.

I just need a little time to build my confidence back up and move on from the events of Friday.

B12 deficiency

I visited my gp on Wednesday 30th July at his surgery. Those of you who are new to this blog will probably think that its not a big deal. For me its a huge deal. Most of my conversations with my gp are held over the phone because visiting his practice is just too stressful and exhausting.

Due to my previous medical care (or lack of) I have been left with a fear of medical staff. I wouldn't class it as a phobia as its not so extreme that I will not go, its just things have got to be pretty bad for me before I will consider a visit.

The night before even a routine blood test will be spent sleeplessly. I have to rehearse every aspect of any topic of conversation that may crop up. I have to be prepared because without being prepared there is a lack of control. 

My gp is lovely, my hospital consultant is lovely but a visit to either of them fills me with dread. You see I used to have a lovely neurologist until he decided that I didn't have myasthenia gravis but instead had psychological issues. This then coloured every interaction I had with medical personnel, who suddenly became very cold and uncaring. I now fear that at a moments notice this could happen all over again.

Without my gp and my consultant I would have no one in the medical world that will fight my corner and actually believe my diagnosis. Even though I have the tests to prove I have severe autonomic nervous system dysfunction, I am yet to find a doctor outside of my consultant and gp that actually believes this diagnosis. They believe that I have Ehlers Danlos syndrome hypermobility type but dysautonomia seems a step too far outside what they learnt at medical school.

 Wednesday was a tough day. I needed to speak to my gp about the fact that my back pain has ramped up to such an extent that I get no relief from it other than sleep and even then it will wake me up.

To prepare for my appointment I downloaded and printed off outline drawings of the human body ( you can find the ones I used here ). I printed off two copies so that I could colour in where the pain is on a good day and where I feel it on a bad day. That way I guessed I wouldn't have to strip off. I did wear matching underwear, which my friend Ellie always reminds me, that in a film that means you are going to be the one bumped off. No one who gets murdered in a film seems to be wearing greying, saggy knickers and bras? I dont know why its not very true to life. 

I digress, so my pictures were prepared a week in advance. Under each picture I also wrote a short summary of what the pain was like on each area of the body plus any extra information I felt was pertinent. That way if my mind went blank I could refer to the information I had on the sheet.

As my husband wasnt coming with me I was having to make it to the surgery under my own steam. I was going to book a taxi however some good friends stepped in and offered me a list there and back. I was however going to have to use my crutches instead of my wheelchair as I can't self propel. Which is probably why I am in agony with my shoulders and collar bones today.

It didnt go well in the waiting room as I had a funny turn and ended up having to rest my head against the wall of the waiting room as I couldn't put my head between my legs without drawing attention to myself. I know its stupid but I dont want to cause a fuss. I leaned myself up against the wall (whilst sitting) and closed my eyes waiting for the room to stop spinning. I also felt like I was going to vomit so I focused on my breathing. When my gp called my name he took one look at me and asked me if I wanted him to go and get the wheelchair. Again not wanting to cause a fuss I said no and just told him to wait for me to get up. He was insistent that I was very, very slow on getting to my feet and he never went further than catching distance in front of me.

The usual pleasantries were exchanged and then he started going through my latest blood test results. The good news is I am not diabetic which had been a fear of my gp's due to the pretty much constant bouts of cellulitis I have suffered. My kidneys and liver are working well. He then told me my B12 results were 178. As I was in the process of recovering from a turn, it took a few seconds for that to sink in. You see I have been telling any doctor that will listen since January that my B12 levels were low. Everytime my B12 levels drop I get pins and needles in my hands, I lose sensation in my hands and have problems telling hot from cold and dry from wet. 

As I am pretty hot on the problems B12 deficiency can cause and pernicious anemia seems to run on my paternal side, I knew 178 was not a good number. However doctor training on B12 is pretty poor in most countries around the world. Doctors will accept that not enough vitamin D and you will get rickets, not enough vitamin C and you will get scurvy but they will not accept that low levels of vitamin B12 will wreak havoc on your entire body. For more info please use this link b12d.org , which is a great website for information regarding both conditions.

Had I been well enough to stand and fight my corner yesterday, as it appears my gp is unfortunately not fully aware of the implications of a B12 deficiency, I would of. I did however in my muddled state manage to tell him I had neurological symptoms. He didn't agree and said that it was due to my poor circulation. After a small discussion, he suggested that he would give me an injection of B12 as an experiment to see what it did. I knew that one B12 shot would make very little difference and I actually needed an injection of B12 every other day until there is no further improvement for patients with neurological involvement eg me and then injections every 2-3 months (NICE guidelines). So as I am providing this blog posts with these links I am simultaneously printing off the information for my gp. 

Please remember a gp is like the jack of all trades, he or she is supposed to know a little about everything and they are only human. Sometimes things will pass them by. Hence why I am not cross with my gp nor disappointed, I will provide him with the information to update him. Should he choose not to use it or to actually give me the correct loading dose of B12 then I will be extremely angry.

I have been shocked by my response to the B12 injection, thinking it could be days or months before I would see any results. The first thing I have noticed this morning is that there has been a massive reduction in the nerve pain in my leg. Its the most comfortable its been since before April 2014. I also woke up this morning feeling refreshed its been years since that happened. For me its too early to say it was the B12 that did it but I am curious to see what tomorrow brings! My gp asked me to ring him if I had any improvements in a few days.

My main reason for my visit was my back however there was the little issue of my syringes to discuss. I dont think that I have mentioned that ever since I have been placed on the drug octreotide, there has not been an issue obtaining the drug but a major issue obtaining the method of delivery. The hospital gave me an ample supply of needles and syringes when I was discharged but by May that supply was running out. This is where the problems started.

The community pharmacy list does not allow for syringes of this size to be issued, its not contained within their list. So unless I was prepared to pay for them my gp was not going to be able to issue them. This lead to many phone calls to the prescribing team and the hospital to try and get this issue resolved. 

All that happened was that it turned into a massive blame game the hospital blaming the gp surgery and vice versa. That left me playing piggy in the middle and I was still without the needles and syringes to be able to use the octreotide. In the end I got an emergency supply of both the needles and syringes from my doctors surgery on several occasions. Eventually needles were prescribed, 400 of them (200 for drawing up and 200 for injecting) but no syringes were forthcoming. That was fine whilst I wasn't injecting due to the cellulitis but as I started using the octreotide again last week I was going to be out of syringes by today (Monday 4th August).

When I told my gp that the syringe situation had still not been sorted I thought he was going to combust! He had no idea there was still a problem but he sorted it immediately. As the hospital would not issue me a prescription for the syringes so I could acquire them from the hospital pharmacy my gp took matters into his own hands and gave me a box of syringes from the practice. The practice can order them for their use but they can not be ordered for patients. A completely ridiculous and kafkaesque situation but there you have it. Now in 3 months all I have to do is ring up and ask for a box of syringes! Why its taken from April to July to sort out is beyond me.

* * *

I started writing this post on Thursday 31st July, I felt like a different person from just one B12 shot. I felt so good I rang my doctors surgery to tell him of the improvement. Later on that evening he rang me to say he now wanted to start me on B12 injections every other day for a week or so. Not exactly the NICE guidelines but it was a start.

That evening on the advice of a good friend in the USA who has suffered permanent damage to her nervous system due to B12 Deficiency I ordered some B12 lozenges from a well known internet site. They would be delivered the following day. 

On Friday I woke up and felt dreadful, I had slept better but I felt like death. The pain in my leg was back and worse than ever. I felt so deflated, had my reaction to the B12 injection just been a fluke? I know what I am telling you is just anecdotal evidence however I am not advertising anything, I am not being paid by anyone, I am not even telling you the brand of B12 or the site I obtained it from. I can only tell you my experience.

Once my B12 arrived on Friday I took the dose my American friend had suggested as a loading dose. Too much B12 is not harmful and my B12 is low, my stores are depleted. I noticed no difference Friday even after taking the dose, all I felt was washed out, tired and disappointed.

Today Saturday morning after two doses of the lozenges my leg pain has gone. When I say my leg pain is gone I mean the horrible screaming unrelenting nerve pain I have had for months and does not respond to medication. I still have an ache / throb in my thigh and down my leg but its like the volume has been muted. I slept deeply last night, I felt like I had actually slept. I haven't had that feeling for 7 years. The only thing that is different in my life is enormous doses of B12 and the fact I have just started watching Scandal. I dont think its Scandal, as good as it is, that has reduced my leg pain.

I am still exhausted and feel like I could sleep for months but then I have been suffering with sleep deprivation for years. The damage done to my system because of the low B12 will take months to repair. My gp has already confirmed this. He has also warned me some of the damage may be permanent. However he has told me that I will be having B12 injections every 2-3 months for the rest of my life after this loading dose.

I hope that my response to the single B12 injection has changed my doctors mind. He believed that there would be no neurological symptoms at a level of 178. Despite the BMJ Best Practice recommendations, The British Society of Haematologists report, the NICE guidelines and the fact my B12 results had come back from the lab in a red box. He gave me the B12 shot as an experiment. Look at the results! 

I hope that my reaction to a B12 injection has changed his mind.

I would like to point out the B12 lozenges will not replace the B12 injections that I am having on alternate days. I am using the lozenges to get rid of the pain in my left leg as because the surgery doesn't open at the weekends I have to wait from the Friday to the Monday to receive my injection. If your doctor says you need B12 injections do not think you can use B12 lozenges to replace them.

If you suspect you are suffering from a B12 deficiency this will advise you on the next step