Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.
I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.
Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.
Hopefully my neurologist will be at my next appointment and we can discuss our next steps.
On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.
I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.
I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.
This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.
Last Friday I attended my rescheduled Orthotics appointment. I was unsure whether there was anything they would be able to but my worries turned out to unfounded. The decision was made that no permanent alterations would be made over the christmas period as that would involve my splint being taken away. Instead elastic type material (but not as stretchy) was attached in a figure of 8 pattern to my splint over my ankle area, my normal velcro strap then went over this to reinforce it. If this design manages to hold my foot in place then my splint will be sent off to have these made permanent. At the moment it is looking positive and doing its job.
Yesterday I went up to London to see my Neurologist. He gave me my usual six injections, which have such a fantastic result. After showing him a photo of my foot in spasm that I took the other day, he has offered to next time administer some Botox injections to my calf and foot. I would be very interested to hear from anybody who has received injections at these sites!
I am still taking medication to treat Chronic Neurological Lyme Disease, since I started these medications around six months ago I have had amazing progress in areas affected by it. So much so that my neurologist even remarked how happy and amazed he was to see the improvements. I am still, with the support of my neurologist, battling to receive IV treatment for Lyme Disease which will hopefully get rid of anything the Oral antibiotics have missed.
Everything seems to be quiet calm for once. Now that the Botox controls my most painful spasms I have been able to reduce the amount of painkillers and muscle relaxants I take. This has resulted in me feeling much more with it and my brain feels less foggy. It all seems to be calming down just in time for Christmas and my Birthday, which is perfect!
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.
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.
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.
Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question. After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.
I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!
If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1
On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that I shall come away from my short stay there with a better idea of how to cope/work around my spasms.
I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.
I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.