Tag: Botox injections

Posted in April 2014, Archive

Disappointed & Disheartened

Posted on by dystoniaandme

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

Posted in Archive, December 2013

Orthotics, and Neurology Consultation

Posted on by dystoniaandme

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!

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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!

 

Posted in Archive, November 2013

Busy Bee

Posted on by dystoniaandme

I intended to write this on Wednesday but this week has been extremely busy – I’m not complaining, I’m loving it, even if Benedict my Dystonia alien doesn’t. Between neurology appointments, college, horse riding and more college, I have been wheeling around like crazy, and sleeping fantastically well due to exhaustion.

I visited my wonderful neurologist on Tuesday, and got my six usual injections. Two to the eye area, jaw and neck. Receiving my injections makes me so happy that I have a trusting relationship with my neurologist, as I really dislike needles and would not let anyone else stick needles near my eyes! He even cracked a joke when cleaning the area with alcohol wipes that he was sorry it was not the good stuff…this really made me laugh as I’d just informed him I was going to try to come off some off my medications over the christmas period so that I could have a drink on christmas day, my 21st birthday and new year.

Whilst I was at my appointment my neurologist diagnosed me with chronic migraines. I have had what I thought were just normal but painful headaches for years. The opticians told me to tell my doctor but he just advised I drank more water which did not help. Recently I was having pains in the back of my eyes that have been so bad that I have had to shut them and go to sleep. I had been concerned that the pains were caused by my blindness, so have been relieved to have this diagnosis. He has promised to look into what treatment he can give me for them, so I look forward to my next visit.

Last week I hurt my back and neck when I had an episode of functional paralysis whilst sitting in my wheelchair – I ended up flopped out the side. This has resulted in a long recovery process. So I am extremely pleased that I have managed to cope with such a full on week.

Despite a repeat incident at college today, my back is not to bad! I find this reassuring as I hope this means that even though my Dystonia still acts up constantly, my body is finally getting used to all the extra activities I have started doing.

I feel like I have gone from drowning in this condition, to treading water, and now I have reached doggy paddle stage. I am not swimming up and down life like a good swimmer, but I’m moving around better, my head is firmly above water and I’m living life to the full.

Posted in Archive, October 2013

Fantastic Neurology Appointment

Posted on by dystoniaandme

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.

 

 

Posted in Archive, October 2013

A change in Tactic

Posted on by dystoniaandme

So my body seems to have decided to change its tactic. Normally when I am in a lot of pain I have a Non Epileptic Seizure. The last two weeks or so my body has disconnected from certain parts of me or all of me, leaving me functionally paralysed. I have had a handful of seizures as well but the functional paralysis does seem to be my body’s main coping mechanism now.

I am in two minds about this change. On one hand I am happy that there has been a decrease of seizures, as it means I am conscious more often, not forgetting hours either way of the seizures etc. On the other hand the functional paralysis can be rather scary. The first time it really hit me I lost the connection to the lower half of my face for 7 hours. A big part of me knew it was just my body coping with pain, but a small part of me was terrified that something worse was at play such as a stroke. When the functional paralysis comes out to play I either disconnect for one to two minutes or I disconnect for hours. There is no middle ground.

As I type my right foot is in spasm. It felt like the force of the spasm was trying to break my big toe. I was in a lot of pain and was beginning to think that I should be sensible and shimmy down the bed a bit so that I did not hurt myself if I ended up having a seizure. However instead of seizing both my legs ended up functionally paralysed despite my left leg having no spasm in it at the time.

I am seeing my neurologist on Tuesday for my injections and a chat, so am going to add functional paralysis to my list of questions. I’m not sure if there is anything he can suggest to help but he may be able to advise something. I think I prefer my body coping this way but at the same time it scares me slightly.

Posted in Archive, August 2013

Amazing Consultant Appointment

Posted on by dystoniaandme

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.

 

Posted in Archive, June 2013

A Fairly Positive Week

Posted on by dystoniaandme

I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

Posted in Archive, June 2013

Frustration With Lack Of Help

Posted on by dystoniaandme

Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.

Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.

I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help.  We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.

I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient  Neuro Physiotherapy service that I could be referred to  This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.

Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.

Posted in Archive, May 2013

Oromandibular Dystonia is Back

Posted on by dystoniaandme

Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.

I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!

I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.

Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.