Sooo after about 2 minutes of sharing my current symptoms and then a quick exam it seems there is no medical explanation for my buzzes, jerks, twitches, burning, fatigue etc so the professor is recommending CBT to try to deal with it.
I’m still not sure how these peculiar things can happen without medical explanation,especially in a perfectly sane person who doesn’t suffer from anxiety, but hey ho. Will go back and see my GP who is sure it’s MS and ask what she thinks.
It will be a good result to not have MS but it just doesn’t make any sense!
It seems that nothing makes sense at times in neurology!
As far as how can these things happen without a medical explanation, have a look at http://www.neurosymptoms.org if you haven’t already. It is a really good site and explains how our brains can generate neurological symptoms when there isn’t actually any damage there.
Professor of movement disorders - but he didn’t ask about the myoclonic jerks at all, what they are like, how they started or anything. He didn’t ask where I get my symptoms like buzzing or find out anything really. He said my eyes are fine (I know that) and my MRI back in December when this first started was clear, my reflexes are ‘pretty’ normal. He was nice enough but said he’d found no reason to think it’s anything sinister.
So CBT it is to see if I’m nuts I guess!
I’m being quite logical - if it is anything organic it’ll prove itself in good time. If not, and I hope he’s right, I’ll just get better in good time.
I’m a counsellor/psychotherapist and I have clients that suffer from many physical disabilities and ailments as well as mental and I have to say as a client (many years in total) and as a counsellor it really can help!
Plus, I have wrote letters for my clients to support claims for Disability Living Allowance. I’ve also supported clients claims that not being listened to or understood can impact further on their health issues which in several occassions GP’s have taken and acted upon.
Try and look at it as a hoop to jump rather than a obstacle to climb. It may well give you the strength to fight on for a diagnosis and medication!
Never say your nuts…it simply isn’t true…however as a fellow limbolander where all my counselling skills go out of the window…I too feel like a fruit cake most of the time!
Take care and good luck and pls do stick around and let us know how it goes
I’m so sorry your neuro review wasn’t satisfactory. It’s frustrating isn’t it. The road to diagnosis is such a hard one to climb but you’ve got a great attitude in thinking that things will eventually prove themselves one way or the other.
V glad you’re not going. Most of us don’t know what’s cuasing our symptoms here and there are some of us that have been told it’s anxiety /stress etc so you’re not alone.
Thanks for the encouraging messages - I’m not going anywhere.
I’ve been busy reading journal papers about FND, read the neurosymptoms website again, gone to the Functional support link on facebook etc and it just doesn’t add up at all. None of it rings true.
One of the papers said that if there is no obvious organic disease neuros should refer patient to psychotherapy to ascertain whether there is psychiatric concern as a way of ruling it in or out. In 8 minutes of assessment I guess they can’t know anything about you can they.
I’m very happy to go down this path and have the therapist write back to the neuro that there is no psychological concern at all. I hope that’s true, you start to doubt yourself!!! I’ve definitely had mega stressful times in my life but have always responded positively (ie, wrote a book; completed my degree and got a 1st; did my PGCE etc) so surely I’d have had neuro symptoms earlier than this! Also… I’ve never had seizures; the jerks are brief - literally a second or two and not prolonged; my symptoms are not one-sided, nor are they ‘fleeting’.
Muddled and befuddled! Also worried about ClaireWWW - has anyone heard from her since yesterday?
Consultants have a fear of things that aren’t concrete. I wonder just how much they can truly tell from an MRI. Even though I had inflammation in my spinal cord from the very first scan there wasn’t enough to go on for a diagnosis. My most recent consultant - a Dr Woolmore - was the best thing that ever happened to me. He explained that although he thought it was MS he had to be as sure as he could because the treatment needs to be right. We went on a ‘journey’ of elimination where I was tested for everything else under the sun, I even had a CT scan of my chest to test for something!? It was nothing else - I was diagnosed with MS six years after my first scan. I know how much not having a diagnosis messes with your head so don’t give up! It’s tiring and annoying and God knows I felt like a hypochondriac at the best of times, but you’ll get there. Push the doctors and request to see an MS specialist neurologist. Our bodies can be bastards sometimes. Xx
I’m back now. Had a bad few days. Have PMd you Deb. Thanks for thinking of me!
GP suggested CBT to me a while back before sending me to Rheumy to investigate ME / Fibromyalgia before all the other stuff happened.
Don’t think it can hurt to try anything like that as it can help people cope with the symptoms even if it doesn’t get rid of them. Also, you still have the option to go back and say hand on heart, ‘I gave it a go and it did bu88er all!’
Don’t go anywhere! We all need to support each other with our ‘b4stard’ bodies! (LOL at Elle)
totaly agree with manymoo,give cbt a good try,i have been and it really does help you manage your symptoms,and looks at areas to help adjust yourlife to help cope with your symtoms,and address them,i do symphasise i too have been diagosed as undiagosed neurological illness.not easy at all.
xxx