Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Archive for the ‘January 2014’ Category

Short and Sweet

Todays blog i am going to keep short and sweet…you can all breathe a sigh of relief ;-p.   I want to start by saying thank-you to all of you who have nominated me or endorsed me for a WEGO Health award, it is extremely touching! Below are some links that I think are really worth checking out! Happy reading.

I was doing my usual surfing of The Dystonia Society’s website and came across the link to The Global Dystonia Registry. This is a huge international database of Dystonia sufferers that scientists and researchers are using to understand Dystonia better. The more sufferers that register themselves on the database the more research can be done, and that can only lead to a more optimistic outcome for us all! For anyone who wants to know more here is the link to The Dystonia Society’s page which explains a bit more http://www.dystonia.org.uk/index.php/about-dystonia/global-dystonia-registry .

This year is full of exciting things, one of those is the London Marathon which my cousin David and his friend Sam are running in, to raise money for the Dystonia Society. I admire them for doing this, despite the weather we have been having, they have both continued training out along muddy canal paths and fields. They log their progress on Facebook and twitter so please follow them as they train to raise money for such a fantastic cause!

https://www.facebook.com/Davidandsamrunthelondonmarathon?fref=ts

https://twitter.com/DavidandSam2014

The Wonders of Medication

It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.

Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.

On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.

My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.

Happy New Year

I would like to start by wishing everyone a slightly late Happy New Year. In regards to my health I have had a fabulous start to the New Year. Last New Years Day I spent in hospital having hours of seizures, this year I spent it recovering from the night before and watching a dvd with one of my best friends! I find it hard to believe how much difference a year can make.

On Monday I am visiting my GP to discuss my ongoing treatment for chronic neurological Lyme Disease. I have been on oral antibiotics for about 8 months now, but have yet to receive IV treatment which is what I need. The response my body has had to the antibiotics has been fantastic, so I can only imagine what my body will be like when I am cured of Lyme. My GP has told us before that the district nurses do not come out to administer IV in our area, which makes receiving treatment slightly problematic. I plan on asking my GP if there is anywhere he knows of that will treat me, even if I have to go privately. My health matters more to me than my money, as it is only by being cured of Lyme Disease and getting my Dystonia under control that I will get back to university.

I am extremely excited for the 28th of this month, when I next go to see my neurologist. At this appointment I will be receiving my normal Botox injections plus injections to my leg. The spasms in my leg are the most debilitating, so I am hopeful that the injections will improve this. The injections I receive regularly have such a fantastic effect and keep the affected areas working so well, which makes me hopeful for a positive response in my leg.

I would love to hear from anyone who has had experience with Botox Injections to their foot/leg, so please get in touch if you have these!

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