hi all,
i am going to have a bloody good rant…
i have been told by my neuro i have “medically unexplained symptoms” and will have to see someone to learn to manage my symptoms, what does he think i have been doing in the past two years!!! as my mri and lp were clear i have gone from a tentative dx to nothing.
i did have some tests with a neuropsycologist and i saw him for the results and he says its all in my head and i can talk myself from being disabled to back to work with a bit of therapy!!!
i have gone from being so upset and scared to downright angry and i want to scream from the rooftops I AM NOT IMAGINING OR MAKING UP THESE HORRIBLE AND NASTY SYMPTOMS,
why on earth do they think anyone would want to be like this to make themselves so flippin ill and relient on others. I WOULD LOVE TO GO TO WORK, WALK WITHOUT FALLING, GET TO THE LOO WITHOUT HELP. what do i do now i feel so lost
lorraine x
Hi Lorraine, I too had initial MRIs and lp that where negative. 18 months later and a second MRI is not. Dx today of RRMS. Hang in there and don’t start disbelieving yourself. You know what is not right for you. Take care.
I totally agree with Shuffler. I had various symptoms, fuzzy head, weak right leg, my GP kept telling me it was all in my head. She kept fobbing me off. I had to bully her into referring me to a neurologist. Had an initial appointment, referred for an MRI, diagnosed with PPMS after one scan. Simple!!! Keep at it. With funding cuts in the NHS I feel they’ll do anything not to refer you. As my GP said when I requested an MRI (after she’d said to me, " What do you want to do now"), “You haven’t got enough symptoms, an MRI is too expensive”!!! Be firm, no-one knows your body better than you do. Keep going back to your GP. Good luck. I sincerely hope it’s not MS. Al
If you don’t believe they are right, then I would suggest calling their bluff: go to therapy, put everything into it and see what happens. If it helps, brilliant. If it helps only a little, by giving you an outlet to discuss your problems / symptoms, then good - at least it wasn’t a waste of time. If it doesn’t help, then the ball is in their court and they have to explain why it didn’t and what next. Don’t underestimate the power of the unconscious mind though. (This is not some wacky Freudian thing I’m talking about here!) A large portion of the brain’s processing is done without conscious input and, sometimes, our brains like to play tricks on us. In some people, this can cause very real, disabling symptoms. Obviously I have no idea if this could be happening in your case or not, but it’s always a possibility. There’s a really good website called neurosymptoms.org that explains it - why not have a look and see if it might fit? If it doesn’t, then it’s going to be a matter of waiting or pushing for second opinions. Beware going for second opinions too soon though - if the test results are the same, the new neuro will almost certainly come to the same decision. In the end though, as medics say, time is the best diagnostician - if it is MS, it will show itself at some point. Karen x
Hi there.
I spent 14 years having tests, all of which came back normal. Yet my mobility worsened quickly.
I guess I was fortunate that neuros didnt give up looking for an answer, nor discharged me.
I was told I had a 95% diagnosis of PPMS, for some years.
Last year I was finally told i definitely do not have MS at all, but something called Spastic Paraparesis/cause unknown.
My symptoms/meds are;
cant walk at all, can stand very briefly for some transfers (use a hoist for others), spasms in feet, restless legs, stiffness in legs, bladder and bowel accidents.
I take baclofen, amitriptyline, quinine, oxybutynin, laxido and other drugs for blood pressure, acid reflux, and cholesterol.
Dont know if any of this helps, but I just wanted you to know that I know what it`s like to spend years wondering what the chuff is going on!
luv Pollx
hi all,
thank you so much for the replies, i know im not alone in feeling so frustrated but i can feel so angry in not being believed. i have decided to use my anger in a positive way, which is a bit difficult as i dont really know where to go or who to turn to next!
i really dont understand how a diagnosis can be withdrawn as i thought ms is for life. and how can you can be diagnosed with only a precentage.
i suppose my fight with the symptoms continues as i am not giving up on myself.
love lorraine x
Hi Lorraine, do go along to the ‘unexplained symptoms clinic’. It’s an opportunity to say your stuff, including your frustrations and any new symptoms. Everything you report will go in a letter back to the neurologist. You will be advised on drugs and they will also say if they think you need a new neurological assessment… see it as not being left in the lurch; it’s a very useful system.
Good luck x
Hi red rain, i am am currently waiting for a appointment with a neurologist! but that is purley because my mum has ms and i have symptoms, but he thinks it is all in my head but surely i cant make myself feel so bad being all in my head. my symptoms are extreme fatigue from getting up in the morning with stiff leg and arm muscles, very unbalanced and memory and speach problems also tingley hands and funny feeling in them and a few others but not all at the same time i have been sufering for quite a few years but to scared to see someone! i hope i get answers and find out what if anything is wrong also the doctor said symptoms he would expect from ms which dont match what ms society symptoms say he mixed them up.
Hi Lorraine
I can sympathise with you and just wanted to say keep strong. Both my doctor and initially the consultant believed it was pyscological and I was equally adamant it wasn’t. Quite frankly, I thought the doctor wrote me off and made a judgement within the first two minutes of meeting me. The first neuro appointment wasn’t much better. I had so many arguments with myself and daily questioned my symptoms and my mind. Was I stressed and didn’t actually realise it? Could they be right? Was it stress from years before manifesting itself? I think that part was as bad as the physical problems I was experiencing. I also wondered if friends and colleagues agreed with the doctors, I am sure a few did. I just know it was never away from mind and a constant battle.
From my own personal experience, it was helpful to know that others were going through the same thing.
Take care.
Hi Lorraine
I can sympathise with you and just wanted to say keep strong. Both my doctor and initially the consultant believed it was pyscological and I was equally adamant it wasn’t. Quite frankly, I thought the doctor wrote me off and made a judgement within the first two minutes of meeting me. The first neuro appointment wasn’t much better. I had so many arguments with myself and daily questioned my symptoms and my mind. Was I stressed and didn’t actually realise it? Could they be right? Was it stress from years before manifesting itself? I think that part was as bad as the physical problems I was experiencing. I also wondered if friends and colleagues agreed with the doctors, I am sure a few did. I just know it was never away from mind and a constant battle.
From my own personal experience, it was helpful to know that others were going through the same thing.
Take care.
you know your own body and keep believing in yourself and things will work out, I too am on the limbo bench. If thats where I will stay, then so be it, although I would love somebody to tell me whats wrong with me
hi all,
i am still waiting for the appointment for the “shrink” and i am even more sure i have a physical illness not a mental one. i seem to be getting worse by the week with symptoms getting worse and new ones appearing. i am doing my very best to carry on as normal and not to let the stress of waiting get to me.