Tag: Lyme Disease

Posted in Archive, August 2013

Todays Hospital Appointment.

Posted on by dystoniaandme

This morning my mother and I travelled to Warwickshire to see an Infectious Disease Specialist who supposedly (according to his secretary) treats Chronic Lyme Disease. I left the appointment with extremely mixed feelings. On one hand I was rather disappointed and on the other hand I was satisfied with what he has said he shall do.

At the start of my appointment he made it rather clear that he did not  really believe in chronic lyme and thought that ongoing lyme could be cured with a 4 week course of antibiotics. He also thought Lyme Disease could cure itself…I have not heard or read about this.  After hearing about my life medical history and an examination he informed us that he was certain that I had had Lyme Disease for a few years but did not think that I still had it. However he said that I at least deserved to have testing done. Therefore he is going to write to my GP and have my GP arrange for me to have an IGM (that may be wrong) blood test and a lumbar puncture for PCP testing to see if there is any lyme in me. Lyme disease testing is inaccurate at the best of times and the fact that I am on antibiotics for Lyme Disease at the moment means that the antibodies shall be suppressed meaning a negative result is more likely. I expressed my concerns to the doctor, who admitted this could happen. However I am very happy he is going to ask for these tests to be arranged.

He was a lovely guy, however I am unsure how I feel about it all. I am going to go ahead with the tests. If they come back negative then I shall book myself into the Breakspear hospital and go through this all again. One big positive out of this appointment is that he confirmed our suspicions that I did have Lyme. That there, in my eyes, is the reason I have Dystonia. My neurologist admitted that they know that Lyme disease can cause Dystonia. It gives me some peace of mind to know that there is a reason behind it all. Now I just have to wait for the NHS to arrange these tests.

Today was just a slightly wobbly stepping stone to future treatment. One way or another I will get to where I need to be.

Posted in Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on by dystoniaandme

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!

 

Posted in Archive, August 2013

ATOS appointment & Upcoming Specialist appointment

Posted on by dystoniaandme

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!

 

Posted in Archive, July 2013

Summer, Spasms, Stories -I need your help!

Posted on by dystoniaandme

In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.

Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.

My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.

Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.

If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either  dystoniandme@hotmail.co.uk or here https://www.facebook.com/dystoniajourney .

 

Posted in Archive, July 2013

The Many Wonders Of The Brain

Posted on by dystoniaandme

The human body is an amazing thing, it is a complicated being that relies completely on the brain to be able to function.However if there is one tiny glitch in the brain then dramatic abnormal changes occur. I am completely fascinated by my brain, I would love to have electrodes on my head for a few days to monitor it, so I could get a glimpse of what my brain is doing wrong.

Take yesterday for example, I don’t remember the day at all, but my mum found me unconscious  due to my Non Epileptic Seizures in a chair, where I remained unconscious for a few more hours. My poor mum had to spend five hours in my room looking after me. Due to my lack of memory we have no clue what exactly caused me to started having seizures, when I came round I apparently complained about my knee a lot, however my knee other than being a bit bruised is fine today. It is times like this that I would just love to know what exactly is going on in my brain. Whilst Dystonia is extremely painful it is also utterly fascinating.

I consider myself to my extremely lucky that Dystonia is not fatal. I may moan and complain about living with it, but in comparison to so many other people on this planet I am considerably better off. I simply have a misbehaving alien bouncing around my brain pulling strings to make different parts of my body react or knock me out.

On the 28th of this month, I am going away to the Cotswolds with my family. I am extremely excited as I have not been on holiday in a few years. Even though my spasming body will still be with us it will be fantastic to have a change of scenery. I plan on relaxing, taking lots of photos and enjoying every single second of our holiday. I am now on a countdown to the 28th!

This week my blog has received well over a thousand views! I would like to say a humongous thank-you to everybody who is reading it. I hope it is raising awareness and helping others!

 

Posted in Archive, July 2013

Spasms, Seizures and Specialists

Posted on by dystoniaandme

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!

 

Posted in Archive, July 2013

Fantastic Consultant appointment

Posted on by dystoniaandme

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.

Posted in Archive, July 2013

Countdown to Consultant appointment

Posted on by dystoniaandme

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.

 

Posted in Archive, July 2013

Life Is What You Make it

Posted on by dystoniaandme

When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped  it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.

This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!

I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.

This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.

I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.

My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.

 

Posted in Archive, June 2013

Summer Achievements

Posted on by dystoniaandme

I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.

It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.

This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.

I look forward to seeing what the rest of the summer has in store.