I am so angry right now. I have tried to get in to see my GP for about two weeks now, but as I have been unable to see him I asked him to phone me. I wanted to discuss having IV antibiotics arranged. When I saw my neurologist 5 weeks ago, he agreed that a lumbar puncture would do me more damage than good and that it was worth switching from oral antibiotics to IV. My neurologist put all of this in a letter for my GP.
My GP is usual a great source of help, and I usually think he is fantastic – however usual is the key word here. Today was one of those days where he was exceptionally un-helpful and left me in a rage. He stated that he did not want to arrange it as it would be “complicated”, and he wants me to come in so he can explain why it was “complicated”. When I pointed out the reason I had not been into see him was because he was fully booked in the evenings when someone is at home to take me, he claimed that was nonsense – I had to bite my tongue at this point as I’m sure the receptionist would not lie to me for 2 weeks about him being booked up. He then asked to speak to my mother!!!! Now I am sorry but I am 20, why on earth is he asking this?! Now my mother comes to all my appointments with me, but really what is so complicated that he has to explain to my mum instead of myself?
I feel disgusted, disappointed and disheartened. He wants ANOTHER letter from my neurologist about IV treatment. Luckily I have an appointment with my Neurological Consultant next Tuesday, so I shall explain and ask him to write another one then, but this is all beyond ridiculous. He already has one letter stating it, how will another one saying the same thing make any difference?
I could go privately and pay for the treatment myself, however it is very expensive and I don’t see why I should to do so, when my neurologist was happy for it to be done on the NHS. Why does the medical profession insist on picking a fight with me at every hurdle? All I want is to rid me body of the disease that caused my Dystonia, is that really too much to ask? After all if they had picked up on it 14 years ago I would not have Dystonia now!
On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to hospital, and had an urgent visit to the dentist as the tremor is actually dislodging my teeth! It all is beginning to get a little bit too much and I desperately want the pain to go away. Knowing that the tremor is actually dislodging some of my teeth concerns me a lot. I still have a few baby teeth with no adult ones underneath them, so to know that this tremor is dislodging them is rather alarming. The Dentist I saw was an extremely lovely chap who reassured me that everything would be done to keep my baby teeth in for as long as possible.
As I have mentioned previously we have been emailing my consultant for several weeks now asking if he could book me in for Botox injections. Today I finally got a date, for three weeks time (July 16th). This is 5 weeks later than normal. Now this may not seem like a long time, but being in agony 24/7 and struggling to eat and drink makes the situation almost unbearable, I am currently only just about coping by taking Oramorph (morphine) and Diazepam. It is also extremely debilitating. I have pain triggered non epileptic seizures, not only does this often result in me ending up in hospital but it also puts major parts of my life on hold. I normally go to my local Riding for the Disabled stable on a thursday for a riding lesson, this is an activity that is extremely important to me and one that I thoroughly enjoy, however I am unable to ride when I am having so many seizures.
There was also no mention of my week admittance into the hospital that was meant to happen over two months ago in this email. I am now sadly looking into transferring to another consultant at another hospital as I feel completely neglected by my consultant. I feel like he dangles hope in front of me and then snatches it away without warning.
On a more cheery note I got my splint for my left leg yesterday! This makes things like getting in and out of the house so much easier and has so far been a joy to wear. It is amazing how much of a difference the little things in life can make!
Yesterday I visited my local hospital to receive my leg splint from the Orthotic Department. We are hoping that the leg splint shall contain the spasms and enable me to rely on the wheelchair less.
The experiment begins 🙂
Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.
My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!
My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are triggered by extreme pain.
Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!! Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!
Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!
Yesterday was an extremely odd day. To be honest I remember nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.
Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.
Friday to yesterday afternoon went fantastically, for once the Dystonia alien decided to take a bit of a break and let me be normal (well as normal as I could be). I thoroughly enjoyed every moment of it. However last night after dinner, the alien decided it wanted to make itself known. It started with my jaw/facial muscles, being pulled in every direction, which caused absolute agony in my TMJ (the jaw joint). Shortly after the spasms ended, another one started, which was more extreme than the last. Due to the pain the spasms were causing, I ended up having a Non Epileptic Seizure. This annoyed me somewhat, as I had managed eight weeks without one.
Since last night my jaw has stayed in a fixed spasm. It is being pushed to the left, whilst also being stuck slightly open. I cannot even begin to describe the pain that this is causing. Due to this I have had to resort to stronger pain killers. These pain killers are great but they do make me feel like I am away with the fairies. However I would rather feel a bit odd, than be in agony. This spasm has also created other problems, such as I am now unable to eat anything other than soup and yoghurt, due to the way the jaw has spasmed, and I am struggling to drink even through a straw. So now all I can do is wait for my GP to send off a referral for me to see someone about treatment.
There is a positive side to all of this though. I have been trying to lose some weight so I am hoping that by only being able to eat yoghurt and soup, it should help with the weight loss. 🙂 There is a silver lining to all problems.
So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!
Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!
If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!
So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!
Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.
Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.
Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.
I feel so thankful for the support and love I get from my family and friends. Without them it would be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!
Having Dystonia means that no day will be the same as any other. Some days may be a good day and others are not so good. This is a fact I have readily accepted. However what I was not prepared for was the spasms that would give everyone around me a shock yet provide amusement simultaneously.
The other day I went to put a knife away and all of a sudden the little dystonia alien decided to act up. Before anyone could help me, the spasm had caused the knife to be flung out of hand, clattering on the ground at the other side of the room. This incident could be one to fear, knife throwing after all is rather dangerous, however all of us could not help ourselves, we all burst into laughter. It was such a random and sudden incident that was shocking yet amusing. Then the next day when my body decided to spasm I sent a plastic cup full of juice flying across the room, making a mess of myself and the floor, but again none of us could help ourselves we had to laugh.
The way I see it is that you have to very clear cut options with dystonia, you can either be angry and become reclusive and isolate yourself so as to avoid potentially embarrassing situations or you can accept that this is what your body is doing, accept the fact you will have good and bad days, yet be able to laugh at the situation, find the positive side to life. After all it is widely known that laughter is the best medicine.
When you visit your GP or go to the hospital to see a doctor or consultant you expect the doctor to say this is what we think is wrong with you, this is the test or tests we shall do to confirm and this is how we will treat it. Nobody expects a doctor to ask the patient what is wrong with them, or ask them how its been treated before and what do they want done.
In my opinion if a doctor does not understand a condition then it is part of their job to go away and look up the condition or go and find a doctor who does, never is it okay to ask the patient what they want done, the patient is no doctor so should not be making a doctors decision!
Whilst I understand that Dystonia is not a common condition and for that reason alone many doctors will never have had any experience in diagnosing or treating a patient with Dystonia, it is thought to be the third biggest neurological condition, so you would hope they would have had some inkling as to what it is.. The ignorance and the behaviour of the medical society is just unacceptable.
If you go on the NHS site and search Dystonia and scroll down to treatment, the first line of treatment is botulinum toxin injections (botoux), this stops the neurotransmitters from reaching the muscles that are affected. Why a consultant felt it necessary to wire my jaw shut (especially as with some of my other medical condition it caused complications), and then try to manual manipulate it, is completely beyond me. It suggests complete incompetence with treating Dystonia. This again is ridiculous, if you are not competent in treating a condition, the don’t do it! Go away and research treatment or speak to someone who does know and can inform you of the treatment line needed!
On yet another trip to the hospital last night I was disgusted with the knowledge that doctors seem to have! This particular doctor had obviously heard of Dystonia but knew hardly anything. Telling me I would be fixed eventually. That particular choice of words annoyed me greatly! You cannot ‘fix’ a Dystonia, there is no cure. Yes there is treatment that can be effective and yes some people are lucky enough that their Dystonia does not come back (small minority). This is the second time I have had Dystonia and this time it has progressed significantly consequently I know that I cannot be ‘fixed’. Secondly when someone is in agony and crying, telling them to stop crying and think positively is ridiculous. Yes positivity is needed but I was not crying because I was being pessimistic I was crying because of the agony I was in. Overall her lack of knowledge to the condition was appalling but I am beginning to realise that this is what i should expect from the majority of the medical society.
I cannot understand the ignorance of the medical society and I do not think that Dystonia being a rare condition is a good enough excuse for their lack of knowledge and behaviour. We go to doctors for a diagnoses, information, tests and treatment. We do not attend a doctors clinic to tell them what to do, nor should we have to, yet I have, several times, been put in the position where I have had to do just that.