Forum

Misdiagnosis

Hi,

Im interested to hear from people who have a ms diagnosis but previously were told it was not ms or it was another condition.

Im going for a second opinion this coming week and sometimes struggle with explaining my symptoms. I often feel that if you mention for example fatigue or weakness the neuro gets fixated with this and other symptoms get ignored.

I was wondering what changed in reaching a diagnosis, was it a new mri, LP, new symptoms of a visit to a ms specialist.

Hope you can help

Thanks Christine

Hi are you after a second opinion because you doubt your diagnosis of MS?

You probably know what happened with my rigmarole, eh?

Pollx

Jan 13 - I had one episode of feeling dizzy and disorientated, whilst bent over cleaning the bedroom (I’ve always said housework is no good for you and should be avoided!) - couldn’t open my hand properly to release the stuff I’d just picked up - it went away, but I was having trouble getting certain words out the next day, too. Went to my GP and explained what had happened. and he referred me straight to the hospital for a CT scan… and then I was told I’d had a stroke. Waaahhhh! Panic! Then certain things started not adding up to a stroke; so back to the hospital, more tests etc, a lumbar puncture, and then the diagnosis was changed to MS in May 2013. I was a bit angry at the misdiagnosis, and the panic it put me through - but it really takes so much energy to be angry, I had to just let it go…

Hi Boudica,

Dont have a ms diagnosis and local endo not doing any further tests. Mri radiologist did say possible demyelination so visit to private endo this week is to get his opinion if only to rule out ms.

Iv had a number of mistakes made by local hospital and because iv got other health issues such as thyroid, crohns and cervical spondylitis and more my new symtoms have not been fully explored i dont believe.

Hi Fracastorius,

Thanks for your reply

Can i ask you before your first symptoms that took you too your GP did you have any other symptoms.

I get disorientated and confused , the other day i had tool my car to a garage with a flat tyre and the garage owner said he would take me home and asked where i lived. I had a total blank not that i had forgot where i lived but my brain did not register this with my speech if this makes sense.

Having second opinion with neuro this week in the hope that either ms will be ruled out or further tests done.

No, i’d always been pretty healthy and didn’t need to bother the doctor too often - which is what made it even more of a shock when this malarkey raised its ugly head! I’d just succeeded in giving up smoking and starting to get fit too (kickboxing and weight training) and then this thing hit me. I had had some symptoms about five years previously, which looking back on it, were obviously my first relapse; but they were never diagnosed as anything other than ‘severe stress and fatigue’ at the time - we’d just moved house and were in the middle of gutting and renovating our house (well, to be honest it was more like 'completely ripping apart and rebuilding it), I was trying to finish my Open University degree in the evenings as well as working full time and then had to learn to run a concrete mixer as well as everything else! :wink: Made it through, though… and breathed a sigh of relief when it was done and swore I’d never do it again!

I didn’t have misdiagnoses, I was constantly told there was nothing wrong with me…it was only slinging those words back at my GP that made him send me for a second MRI (13 years had elapsed by now) and the second MRI showed lesions! Was I glad to see those lesions! Phew, I’m not crackers!

Yeah, it’s something of a relief to get the diagnosis in the end (as you say, “I’m not going utterly crazy, there is something wrong!”) and then you have to learn how to start living with it - which I’m still doing now, as are we all I suppose!

Fracastorius (Jane)