Tag: information

Posted in Archive, January 2018

Overwhelmed But That’s Okay

Posted on by dystoniaandme

In my head life after the suprapubic catheter insertion was going to return to normal pretty instantly. I didn’t really factor in healing time (which is prolonged due to my eds), or think much about the lifestyle adjustments I was going to need to make. Typical me really. Full speed ahead mindset with no allowances for my health; you’d think I’d be a dab hand at this by now.

The first 48 hours or so my mindset was pretty good. I was just so relieved to have got through the operation without any major complications and was still dopey from the morphine. Yesterday and today have been a lot harder. The bladder and urethral spasms have been constant, the insertion site has leaked frequently, and the scrapping sensation in my bladder leaves me wanting to remain motionless. I was discharged with very little information on how to care for the catheter or what to expect/, how to manage. Simply we’ll see you in six weeks.

We discovered quite quickly that even my usual clothes were no longer suitable. My leggings which I live in are simply too tight for the bag to go underneath without compressing it. Whilst I could wear the whole system on the outside, I’m not there mentally yet, to brave being out and about with that on show yet is daunting. These probably all seem like trival problems but they add up.

I know once all the pain has settled down and we find a medicine to help with the bladder spasms etc I will feel better about it all. I just wish I had been more informed on what to expect and what to do once I was home. On a more positive note I am so thankful for the support group on Facebook that I found who have been a treasure trove of information for me the last few days. I have ve always found comfort in information so this group has been a saving grace.

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.