Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE
I have put off writing this blog post for a few weeks now. Not because I didn’t want to be open about what I’m currently experiencing, but because putting it all down into words makes it all very real and I am finding it extremely hard to deal with. As I have mentioned before the doctors believe my Dystonia is caused by damage to my brain by Lyme Disease. I contracted Lyme Disease when I was six and have been on oral antibiotics for it since May last year.
A couple of weeks of a go I finished the last of my oral antibiotics. Although I had been told that realistically I needed IV antibiotics to cure my neurological Lyme disease, I had hoped that a year on oral ones may have been enough. Unfortunately it had not been and over the last few weeks my hand spasms, back spasms, vocal tics, fatigue, on/off functional paralysis etc have all come back. I have been coping with this the best I can, its been coming back slowly so I have had a chance to ‘adjust’. However now and then spasms will happen and I will have a bit off an emotional wobble. I cannot write anymore, I struggle to do my make-up, getting dressed has always been hard due to my Dystonia but throw in Lyme Disease and it takes most the morning to accomplish on a bad day. Yesterday I was just trying to pay for an item in a shop and my hand spasmed around the card reader, I could not let go. My friend had to try to yank my hand off it whilst the till worker pulled the reader out. I was mortified!
Yesterday I visited my GP who does not believe in Chronic Lyme, my mother and I went prepared to do battle. He is normally very dismissive of anything to do with Lyme Disease and had previously said to me that even if my symptoms came back he would not be willing to prescribe me anymore antibiotics. Thankfully he seems to have had a slight change of mind and has give me 2 more months worth. In this 2 month slot I have an appointment at a private hospital that are known to treat Lyme Disease, I am hoping that they will be willing to give me the IV antibiotics that I need to cure me. I am not sure how likely it is that I will get anymore antibiotics off my GP after this 2 month supply runs out. I started them today, and should hopefully see an improvement in the next few weeks. For now I am keeping my fingers crossed that this private hospital pulls through!
On a much more positive note I had my Botox injections last week for my Dystonia which means my jaw and neck will be in place whilst I am on holiday!
This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.
We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.
We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.
It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.
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!
Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.
I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.
Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.
I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.
I am really happy at that moment and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.
Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.
He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.
I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.
I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.
Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.
Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.
Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up) was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me. However I am still hovering on the side of caution until I receive the report.
This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.
I look forward to Saturdays appointment revealing my next steps!
Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.
As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.
This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.
This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.
Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!
My appointment with my Consultant today went amazingly well! I was so relieved that I did not have to argue with him, some of my questions he brought up before I could ask which was fantastic. He has offered to do my injections every 6 weeks – Guidelines state 12 weeks so this is a fantastic offer. I have left with an appointment booked for the end of the August!
He listened to all my concerns and questions and was very understanding. Knowing that I will be seen every six weeks is so calming, I feel like a huge part of me has breathed a sigh of relief as this will mean no more weeks on end of being in agony and my seizures should stay under control.
At my appointment today he administered injections to my jaw and neck, which was thankfully relatively painless, though my jaw did decide to go into an even more extreme spasm after the injection which was slightly amusing. I raised with him the issue that I am now unable to wear my glasses (which I am meant to wear for everything but walking – or in my case being pushed around) as when I do it causes a spasm around my eyes that makes me look sort of permanently surprised, he was unsure whether this was also related to my jaw spasm so has agreed that if this is still happening when I next see him he will do Botox around my eyes as well – this would be fantastic as it could help some of my eye spasm as well.
I spoke with him also about having IV treatment for Lyme Disease, he was a bit hesitant about what to say as he was unsure on what meds I would need and for how long. I explained that all I needed him to do was give the OK to my GP and that I would find a specialist Lyme doctor to discuss IV medications and length of time with. He has agreed to write to my GP saying Ok, which is fantastic. Now all I have to do is find someone to treat me.
The appointment overall was excellent and I really felt he listened to me. I am ecstatic that I have left with an appointment for six weeks time. I am going to be having an early night tonight as I am exhausted from todays trip to London, but I shall be going to bed an extremely happy bunny.
I am now on the final countdown until Tuesday when I have an appointment up in London with my Neurologist. Over the last few days I have gathered lots of different information so that I will be able to present a concise, confident and convincing argument to him. I do plan on letting him administer my Botox injections first though before getting into any debates with him!
I have a number of issues that I need to discuss with him. The first being the timing of the injections. When I see him on Tuesday I will be 6/7 weeks over due for my injections, this is ridiculous especially as the spasm and tremor in my jaw is actually now loosening my teeth! He has always insisted that the best and quickest way to get an appointment is by emailing him, however the recent months have proved this method to be useless so I shall not be leaving the hospital without an appointment.
Another issue I would like to discuss with him is Lyme Disease treatment. I am currently on oral antibiotics, however for late stage neurological Lyme Disease a mixture of different high dose IV antibiotics is needed. I asked my GP about this the other day but he wants me to get my consultants approval for the go ahead first. I am not sure how likely I am to get it, but I am going to try my best and will not give up easily.
I feel this appointment will decide if I shall stay under his care or not. As much as when I am with him I love him and have confidence in him, since April he has let me down. He has dangled hope in front of me and then never come through on his offer. I know this is not deliberate but at the end of the day I need to be under a consultant who can provide me with the treatment I need at the correct time and who will stay true to what he says.
I am very much looking forward to Tuesday though as I will finally get my very much needed Botox treatment for my Oromandibular Dystonia and my Cervical (neck) Dystonia.