Tag: Conditions and Diseases

Posted in Archive, January 2015

Dream A New Dream

Posted on by dystoniaandme

Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.

He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.

My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.

 

Posted in Archive, January 2015

Mallet Finger or Dystonia?

Posted on by dystoniaandme

Last Friday I attended an outpatient Hand Therapy appointment. I thought this would be a simple check up on how my finger is healing, splint it back up and send me on my way home. What I forgot to factor in is that with my body being rather dysfunctional that would all be a bit too simple! I saw a lovely woman who after assessing my hand decided that my previous diagnosis of Mallet Finger was incorrect and the Dystonia is in-fact in my whole left hand. After questioning and examining my hand for a while she came to the conclusion to that the Hand Dystonia was pre-existing and was most likely covered up by the Neurological Lyme Spasms I had been experiencing previously in my hands.

I was rather thankful that I did not go alone to the hospital appointment as the diagnosis came as a bit of a blow.  Being accompanied to appointments no matter what your age is something I think is rather important. An appointment may seem like a routine check up but you never know what conversation you will have to have and support is vital. Sometimes just having someone else to listen to the conversation so they can make a note of anything you miss is a huge help. For me having someone I trust listen to me panic afterwards and help calm me was exactly what I needed. Being a Reflexologist, obviously using my hands is vital, however the hospital have advised me to be on hand rest till the end of February when they will assess the splint need again, I will have been on hand rest for almost 3 months by then.

Thankfully in the meantime I am seeing my lovely Neurologist at the end of this month for my Botox injections and to get his opinion on my hand. I am on countdown to seeing my neuro as my Botox last month did not take and I have been in agony since. My GP yesterday gave me some new muscle relaxants to try so im keeping my fingers crossed that these will offer me some relief until then.

 

Posted in Archive, January 2015

Spasms Four Weeks Early

Posted on by dystoniaandme

For just over two years now I have had regular Botox injections to help control my Dystonia. It started off being every twelve weeks but we soon established that I need it more often than that. By the five to six-week post injection mark the spasms would be back. If I was lucky they would be minor spasms, if I was unlucky I would experience jaw tremors that were slowly loosening my teeth and extreme spasms that would dislocate my jaw. Thankfully my wonderful neurologist was willing to bend the rules a bit and has since been administering the injections every six weeks, which has worked well.

However as I am sat here typing this I am debating taking another Tramadol to help me deal with the pain of my jaw spasm. Normally when I reach this point I have a week at the most to go before my next injection is due. The knowledge that the pain will soon be but a distant memory is comforting. Today things are different. Its been only three weeks since my last round of my injections, and because I wanted to see if I would be able to last longer in-between injections my neurologist agreed on doing them at week 7. That’s another 4 weeks. I have spent the day wondering what’s changed. I know that becoming resistant to the Botox is a risk due to how often I have it, however my neurologist assured me that as I cope on a lower dosage that this risk was minimal. Now I know there is always going to be somebody  who has a side effect no matter how small the risk, but if this was the case I would expect my neck or my blinking to be starting to spasm too, as I also have these areas injected as well.

I briefly entertained the idea that perhaps he hit the wrong muscle this time after all no Doctor, no matter how good is perfect. I struggle to believe this though. If I cast my mind back over the last few months I am aware that I have spasmed earlier than usual on several occasions, admittedly however never this early. A glance at my symptom diary confirms this. A part of me wonders if perhaps I just need the dose upping in my jaw. I have much  higher doses to my neck, but still with enough room to allow more to be injected to the jaw muscles.

I have taken a Procyclidine tablet in the hope that this will take the edge of the spasm. Between Procyclidine, Volterol, Tramadol and if needs be Diazepam I am hoping to be able to control the spasms and pain levels. The idea of spending the next four weeks like this puts fear in me. I cope better with the majority of the rest of my symptoms, Jaw spasms I struggle with. Everything from a sip of water or eating soup, to talking can aggravate it when its bad. Diazepam is always my last resort. Even on a small dose I struggle to stay awake.

When discussing my worries with my mother earlier she pointed out that perhaps this is just a blip. Blips have occurred before, though normally this is because I have caught a cold or some other bug causing my body to go into meltdown mode. Right now I would welcome a bug, anything to explain the spasm and take away the anxiety of another four weeks of pain.

I am reluctant to give in to the pain and medicate myself anymore right now, as I know this could be just the tip of the iceberg and if it is I want to feel like the medicine has made a definitive difference. If I give in early and take them every four to six hours then when I reach the bad stage it won’t feel like they are making a lot of difference. In the meantime my medicine of choice shall be curling up and watching Jack Whitehall and Russell Howard. Nothing like some comedy to lift the spirits!

 

Posted in Archive, December 2014

Reaching My Christmas Goal

Posted on by dystoniaandme

I haven’t posted anything in almost a month as I have been bursting with such amazing news that I wanted to share around Christmas. As many of you know each year since I got ill in 2012 my goal has been to be able to walk by Christmas. It never mattered to me whether that was with the use of splints, walking sticks etc., as long as I was up and out of my wheelchair and back in control of my legs. Thanks to the private hospital I am under who are treating me for Chronic Neurological Lyme Disease I now know how much of my body is Lyme and how much is Dystonia. I am absolutely thrilled to say that my jaw, neck and my arm twitches/jerk spasms are all of me that is Dystonia; I could cry with happiness just writing that as I am extremely lucky that these three are controlled well by injections and medication.

I’m still having a lot of physiotherapy to help me learn to walk, and due to my EDS type 3 I have to wear a number of splints on my legs to help support my joints. I even have funky pink polka dot walking sticks. I’ve got a lot to learn still as due to my damaged ankle ligaments I fall over a lot, this recently resulted in a dislocated finger and broken tendon. However that is minor in comparison to the joy I feel. The private hospital I am under have decided to prescribe me another 3 months of medication, along with running several new tests, but that’s a separate blog post for the New Year.

My neurologist has been so supportive, when he first met me I was unable to walk and even attempting to stand was rather risky. It is great to be able to go for my injections and see how thrilled he is for me. He is pretty sure that the Chronic Lyme is what caused my Dystonia due to damage it can do to the brain. Although the spasms I am left with are painful, and my Oromandibular Dystonia can cause my jaw to dislocate, my symptoms are much more manageable now than what they were!

On that positive note I would like to wish you all a very Happy Christmas and a Fantastic New Year! I shall be back to my regular blogging self in the new year.

Posted in Archive, November 2014

Looking Forward

Posted on by dystoniaandme

At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.

As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.

I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.

Posted in Archive, November 2014

Let’s Talk About Meds!

Posted on by dystoniaandme

I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.

One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.

When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!

At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.

Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.

Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!

Posted in Archive, October 2014

Clinging To Hope

Posted on by dystoniaandme

Frustration. Worry. Pain. Hope. Joy. A selection of the emotions that over the last few weeks I have experienced. I have improved leaps and bounds since I started new treatment for Chronic Neurological Lyme Disease several weeks ago, there is a long way to go but the improvement are more than I could dared to have hoped for. Yet I feel like I am clinging to these improvements, that they might slip away at the slightest wrong move.

I must admit that on some level I am fuming that it has taken 16 years to get diagnosed. I have spent the majority of my life ill, passed from one specialist to the next, having test after test. The result of their continued ignorance is that I shall now have to live my life with Dystonia. I was not born with it, as far as we know it is not genetic, if I had simply been given antibiotics when I was six or in the couple of years after that I would not have to live with (a currently incurable) movement disorder.

I would not have to cope with the agony of my jaw dislocating due to spasms, or my neck twisting hideously. My ligaments throughout my whole body would not have been so stretched due to spasms that it shocks physiotherapists at the extent of the damage. I would not have developed pain triggered Non Epileptic Seizures if not for Chronic Neurological Lyme disease and Dystonia. I would not have spent 10 hours unconscious seizing in A&E on New Year’s Day 2013. I would not have collapsed and seized in the middle of roads, on the stairs, in shops etc. I would not have put my family, my friends, and myself through hell and back.

Although I have always been ill in one form or another it was not until 2012 that it became disabling, right at the end of my first year of Midwifery training. As many of you know, Midwifery is my dream job, and I hope to one day be able to go back to my training. More than Midwifery I dream of life without illness (I except I have to live with Dystonia). A life where my family don’t have to plan their activities around my health. A future where I can live life to the full without worrying about the impact it will have on my health! Without full treatment for Chronic Neurological Lyme Disease I won’t get better. I will continue to deteriorate rapidly. Lyme Disease has claimed the lives of too many people already I don’t plan on being its next victim. I need to raise £10,000 to fund vital treatment if you are able to please help or share this page/link! https://fundrazr.com/campaigns/erfg6/ab/04081d

 

Thank-you!

x

 

Posted in Archive, September 2014

Excitement and Nervousness

Posted on by dystoniaandme

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

fff

Posted in Archive, August 2014

Emotional Turmoil

Posted on by dystoniaandme

Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.

Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month. 

I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.

The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!

Posted in Archive, August 2014

Positivity Promising Proactive Prospect

Posted on by dystoniaandme

Its been a few weeks since I blogged and it is hard to know where to start as so much has happened. I have had hospital appointment after hospital appointment, and I find that I am still trying to wrap my head round them all. I’ll keep todays blog brief and just mention a couple of appointments.Thankfully though my Dystonia has not been too bad as of late, my legs are tolerating my splints with more ease which is making life and physiotherapy much easier.

Last week I had an appointment at the Royal National Orthopaedic Hospital to see a specialist to do with my Joint Hypermobility syndrome, she has decided she wants me put on an outpatient program there building up towards being put into a 3 week intensive rehabilitation program. It was extremely a positive appointment that has left me feeling very optimistic. Joint Hypermobility Syndrome combined with Dystonia means my body can end up in some weird and wonderful positions, which can be rather painful, so I am hoping this program will give me some coping tools.

On Wednesday I attended a local private hospital that treats Lyme Disease to see if they would consider treating me. The Dr was rather lovely and very thorough in her examinations which left me feeling quite confident. They took blood to test for a number of things including Lyme Disease, and explained the treatment process if the results they needed came back. Having treatment through this hospital will be extremely expensive however you cannot put a price on health. Lyme disease has robbed me off so much of my life, and in many cases literally takes people lives, I don’t plan on being next. The NHS turning a blindeye on this condition will be one that in years to come they will look back on with regret.

This coming week is filled with more appointments. I am rather looking forward to seeing my neurologist, I am going to ask if he will botox my calf again and see if this helps with learning to walk!