Tag: General practitioner

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

A Year On

Posted on by dystoniaandme

I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia. When I first received my diagnosis it seemed like the end of the world, I did not know how I was going to be able to cope with life. Now I am much stronger person filled with determination to make a difference.

I strongly believe that everything happens for a reason and even if you cannot see the reason at first, eventually you will. I believe I have Dystonia so that I can help raise awareness of the condition and help bring about a change so that sufferers receive better treatment. I still have a long road ahead of me but its one that I won’t give up on.

I visited my GP today to ask about further treatment for suspected Lyme Disease. I responded extremely well to the first month-long course of antibiotics, due to this my GP has prescribed me 8 more weeks of antibiotics to see if I have any further improvement on them. My main improvement so far has been in my hands, which has been an extremely exciting development for me. When I see my consultant on the 16th of this month I am going to put across to him that Lyme Disease could have caused my Dystonia. As Lyme disease is curable with enough antibiotics some of my current symptoms could disappear for good, and only the Dystonic spasms shall remain.

I also visited my dentist this morning to have my teeth cleaned. I can not rate the dental practice highly enough, despite my spasms and seizures whilst I was there they were extremely kind and patient with me. As my tremor is dislodging some of my teeth it is calming knowing that the dental practice will do all they can for me.

This afternoon I have a session with my reflexologist. I am so glad that she is coming today as I am extremely exhausted. It amazes me how quickly my body gets tired. I used to be able to be on the go all the time but now just two quick visits have left me half asleep.

I still cannot believe that I have suffered from Dystonia for a year now. Whilst I hate this condition, I also embrace it. By embracing Dystonia I am able to put all my energy into raising vital awareness and funds. The more awareness that is raised the sooner a cure will be found. My next awareness challenge I have set myself is to turn parts of my blog into a book. I  hope that by doing this more people will learn of the condition.

Dystonia may control my body, but I control the path I take in life. I choose to make a difference!

 

Posted in Archive, May 2013

Have we found stumbled across the cause??

Posted on by dystoniaandme

Whilst sitting in a waiting room the other day my mum stumbled across an article about Lyme Disease. Lyme Disease is carried by some ticks and can be transferred via a bite. Later that day my mum did some research about the disease after remembering that I had been bitten by one when I was six up in Scotland, and the area is known to have ticks carrying the disease.  When reading through the symptoms she found that the majority of medical issues I have had through out my life fits with Lyme Disease.

Lyme Disease can cause a majority of problems. In late stages of the disease neurological problems can occur such as muscle spasms, memory loss, twitches etc and can cause Dystonia. I was never tested for Lyme Disease at the time as my parents did not know of the condition. The tick was attached to me for 24 hours and I developed a large rash afterwards. Testing for Lyme is unfortunately not accurate. The tests can result in many false positives and false negatives, some Lyme patients have been tested over 5 times before they got a positive result. The test is only about 30% accurate.

I visited my GP this morning with my mum to discuss this with him. We went armed with information from medical sites, and prepared to fight for a test. Amazingly we did not have to fight! My GP listened to us carefully and decided that instead of ordering the blood test he would start me on a high dose of oral antibiotics instead. I am to take these for a month and see if I get any improvement.

From what I have read if you have late stage Lyme Disease IV antibiotics are the best line of treatment and this goes on for several months. Often antibiotics do not show any positive results for months, in some cases it has taken up to a year. I know that I am unlikely to have any improvement on just one course of antibiotics and that I may have to fight to get another course of them, but I am extremely thankful that he has agreed to put me straight on them.

The information I have read is extremely interesting and whilst there is a chance that I do not have Lyme Disease and that is just a coincidence that my symptoms through out my life fit so well, I cannot help but hope that we may just have stumbled across the organic cause for my Dystonia.

 

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.

Posted in Archive, May 2013

Simple Lessons

Posted on by dystoniaandme

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.

 

Posted in Archive, May 2013

Dystonia Alien Gets Creative

Posted on by dystoniaandme

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!

Posted in April 2013, Archive

Medication side effects

Posted on by dystoniaandme

Normally I don’t really get any side effects to medication. With one of my medications, called Gabapentin, I find that for about 24 to 48 hours after upping the dosage I am a bit of hormonal wreck, but that soon calms down and I’m back to my normal self. So when I started taking Clonzepam I expected to have no side effects, or only minor ones.

Instead I have dealt with the joys of being fine one minute  and a paranoid, weeping, agitated wreck the next. The smallest thing can set me off, for example my step dad simply asked what I wanted for breakfast this morning and I broke down into tears, then this afternoon I found out that due to Fridays trip to the hospital I am not allowed to ride this week, cue more tears. Right at this moment in  time I am extremely agitated, if I was able to walk I would be out the front door, seeking a decent length stroll to calm down and get fresh air. Instead I am sitting telling myself over and over that it is just the medication making me feel like this and I will soon be fine…and then the paranoia hits again.

Due to how extreme these emotions are I spoke to me GP and expressed my concerns. He has suggested that I start taking Tramadol (a pain-killer/pain blocker) daily, so that my seizures will be triggered less which in turns means I wont have to take Clonzepam unless I really have to. This sounds like a good plan to me, so I shall try it out. I do not want to stop taking Clonzepam because I would like to see how beneficial it is, so I am just going to have to suck it up and learn to deal with the side effects.

Tomorrow is another day, which will hopefully be better and brighter,

Upcoming Hospital Admittance

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.