My Own Worse Enemy

I had an appointment with yet another neurologist. It has left me thinking I am my own worse enemy!

Category:

People & Blogs

Tags:

• me/cfs
• neurological problems
• myoclonus
• movement disorder
• neurologist

[janszafranski]

I know exactly what you mean... I became so exasperated last time where the registrar did tests and 'discovered' Babinsky & other positive reactions but concluded that it couldn't be true if I had a psych disorder so concluded that they must therefore not be really happening- rather than entertain the possibility that maybe they proved it wasn't psychological. The new neuro today wants me to have an MRI and LP... several days in hospital for tests. A good start - I'll try not to get my hopes up.

[kaazoom]

Im glad it went well for you today Jan. Hopefully this time they will look at you properly and find out what is causing your problems.

[neelubird]

You are not your own worst enemy.These neuros are a disgrace and treat you worse than I'd treat my worst enemy so clearly they're the ones with the problem.Trust me, if you weren't nervous they'd have still said the same rubbish cos' that kind of nonsence comes from a closed mindset and seeing a patient who isn't nervous wont be enough for them to even consider being open minded.A 4 year old would give you better medical advise than your neuros- your grandson probably knows more than them;)

[kaazoom]

The other thing is if you seem to be indifferent to your symptoms and too relaxed about things that too is considered a sign of conversion disorder. It's called La Belle Indifference. You cannot win!

[janszafranski]

Hi... sorry about the continuing disappointments. I'm still in the same situation (I'm off to a new neuro in a couple of hours). I just wanted to say not to beat yourself up about the nerves... I thought the same and decided to be confident... problem was the (then new) neuro still responded the same, so it doesn't matter whether you're newrvous or not, they'll still say it's psychological (nerves cause the spasms / confidence fakes the spasms for attention).

Wish me luck with my new neuro

Jan

[kaazoom]

Hi Jan. The problem is once someone has given you the conversion disorder tag, it is almost imposible to find a neurologist who will take you seriously. It takes to much time for them to think for themselves and influencial psychiatrists like Simon Wessely, Peter White and co, say over investigation will only intrench abnormal illness beliefs! I hope your time with the new neuro goes OK. There are some good ones out there.

[sillygoose61]

Paul, like I said in my other post, if I win the lottery I will pay for a plane ticket and your medical expenses to fly to the U.S.

You are not your own worst enemy! I hate to say it, but it appears to me that the healthcare system in the U.K. probably is . . . It's next to impossible to get a real independent opinion when you have real doubts on a diagnosis because of the way your health system is set up.

I'm sorry about what you're going through.

Deb

[Bluebottle83]

Hugs Paul,please don't give up. Can you afford to go privately to the Breakspear hospital? It is very expensive, but they are very thorough. If not, then oive blood microscopy is not expensive and might find something.

The NHS keep repeating the tests that they know will come back 'normal' with both you and with me, instead of sending us for tests that might actually show what the problem is.

[kaazoom]

I think you are probably right. I was not expecting this appointment. I'm thinking of asking my GP not to refer me to any more. I cannot stand the way I end up feeling. I am still having physiotherapy, but the therapist is changing tack and moving me on to gentle stretches as the exercises she gave me before were making my walking worse. My muscles feel tight when I am walking but all the neuros say I have no spasticity! So I don't know what to make of it.

[kaazoom]

The problem is, even if I got a diagnosis, there is a good chance there would still be no cure. Do I have M.E. , PLS, Parkinsonism or any other neurological disease? I don't know. What I do know is there are few neurological diseases they can cure. They can only offer symptom relief. The real problem for people like us is not being taken seriously and treated as if we are making it all up. It is really bad that going to see a doctor can end up making you feel worse.

Thanks for the support.