Imaginary illness

Do continue

Mine are definitely not just imaginary, that would mean all of the diagnosis I've had done were for nothing, and having 6 BoTox injections every 10 weeks by one of my Neurologists team, is also in my head. They are for Cervical Dystonia.

Initially, I had an accident which felt like a crink in my neck, but by the second day, my head was being pulled in to my left shoulder. My GP at the time had never seen anything like it, hence he thought I had been injecting myself with recreational drugs!!! Perhaps, I looked stupid - lol, but I have never touched drugs of that nature! As soon as he referred me to a local Neurologist, he said to keep him informed because he was interested in what the diagnosis was going to be. The company I was working for put me on the sick for six months before letting me go, completely - due to insurance problems that I would not only be a danger to myself but to others as well. At this point, I was put on Epilim for Epilepsy which was linked to Neurological disorders. From the local Neurologist I was referred to Professor David Marsden of Neurology in the USA.

Originally, diagnosed with Focal Segmental Dystonia by Professor of Neurology David Marsden and his team, I had to meet them in Queens Hospital in London, after they flew in from New York, US. Even then it was nearly 2 years to fully diagnose me. Back then MRI Scans were expensive machines, so I was driven by ambulance 120 miles, and stayed in Hospital for 7 days, and had to see him every 3 months in London.

Over the years the disorders have become worse:

Focal Segmental Dystonia

Focal Hand Dystonia (Writer's Cramp)

Torsion Dystonia

Generalized Dystonia

Cervical Dystonia

From those the Epilepsy became worse, seizures more aggressive.

I was admitted to hospital for Testical Cancer, while this was done which only takes a few days, I was monitored for further Epilepsy Seizures, many were, but other seizures appeared called Functional Episodes (there is roughly 28 variations of this type of seizure, but no electrical pulses are generated in the brain).

About two and half years later, I was rushed back in to hospital with Intestinal ischemia, a serious condition that can cause pain and make it difficult for your intestines to work and possible death. When I was operated on 50cm of my intestines had died off and turned gangrene, this was removed and I was sticthed back up. 2 days later I should of been on the mend, but insted I could not keep no medications down, so they were done intravenously this still made no difference and later in the day I pushed the emergency button because I started throwing up black bile, the doctors panicked and rushed me to theatre again, I did not even have time to sign the consent form. I was put to sleep, this time they found part of my bowel had been touching the intestine which had also started to turn gangrene. They removed part of my bowel and more intestine. It took me about 3 weeks to leave the hospital, and 10 months before the pain was fully go.

I am now on over 30+ tablets a day over 4 periods, that includes Tramadol and a number of other painkillers. I have to sleep on a hospital bed in one positiion all night - if I lie on my right or left then I have chronic muscle pain in either leg. I also have to cope with muscle spasms, cramps, swollen legs, ankles and feet.

I cannot drive or use a powered or manual wheelchair because my brain sends the wrong signals to the muscles. Spasms I get all the time, the dystonic problems have caused my left foot to pull inwards so trying to walk is hindered by a bad gait.

I see the British President of Neurology around every 5 months, Dr. Dr Geraint Fuller MA MB (hons) BS PGCME MD FRCP - and I also email Dr. Jon Stone Neuro-surgeon specialist.

Think that's about it.........

If I have missed anything off or the grammar is bad, its due to medications causing mental blocks, not anything else.

Regards,

Les.

Hi Les,

​Wow, that's a very interesting read I can't begin to understand how life must be for you at the moment.

​I have not heard of Dystonia I will do some research.

All the best

forrest

 

Hi Forrest,

There are many other areas I missed out, not on purpose but because of what I was being checked for. My doctor noticed I have memory issues, these are short-term, but nevertheless annoying.

I have been seen by Neurophysiotherapists to see if they could help, certain twists in my body, by this I mean if I try to stand up using bars, the dystonia in my pelvic area twists this causes pain because what I am essentually doing is putting about 90% of my body weight on one leg, and only 10% on the other, hence why it is impossible to walk properly - if I concentrate I can sometimes balance for a few seconds, but then strength in my arms go, and again I lose my balance. On the last few attempts, my Neurophysiotherapist tried pulling my twisted foot straight, course the Dystonia fights against anything like that being done, and I ended up with a massive calf cramp!

That's life, I write more later...

Hi lynne,

​Being diagnosed as having hypochondria would make life very difficult and frustrating even infuriating. I'm glad you eventually got help.

hi forrest, thanks, and yes it really does infuriate when it goes on and on, to put it mildly, and such a relief to get a diagnosis, and then treatment.

Les, wow,what a battle youve been through, but your spelling and grammar is good, better than many on net,including self.  Despite getting a diagnosis and my symptoms reduced 90percent years ago, l think age now also aggrevating, frequent low hip under butt into thigh pain, l also get cramps and spasms in legs and hands, also causes tiredness and the mental fog you mention with short term memory poor,

Being older myself and growing up in poorer times when most were naturally thrifty due to it, but my mental fog memory led me to forgetting to take my cash from the machine yesterday, 2 min later check and gone of course, furious, one of many consaquences of mental affects of pain illness, even  worse than that socially, relationships,  so well done for  writing it down understandably.  Keep battling and best wishes. .