Recently diagnosed - “labrynthitis” on a Saturday at out of hours, GP on the Monday with tingling in addition to the dizziness, neurologist on the Tuesday, MRI on Wednesday morning and telephone call to confirm MS Wednesday afternoon and three days IV steroids on Thursday, Friday and Saturday. All very quick and superbly efficient. Within days I had a specialist MS nurse, incontinence nurse, O/T and physio all coming to the house. Social services had been out and measured up for adaptations and then returned to fit them.
However…
this was 6 weeks ago and I am still not fit for work - symptoms started 12 weeks ago. Been back to see neuro as organised by the nurse. I can honestly say, that I have never in my life been spoken to in such an appalling manner. I am sorry if my symptoms do not seem to have responded to the steroids and that indeed some symptoms have worsened and I am sorry if, for whatever reason she feels that I am imagining what is happening to my body and mind but strangely she seems unable to grasp that this is driving me nuts. I want to get back to being me, like yesterday and I would rather like her to help me to do that. I am unmedicated and have never been told what type of MS I have. And that is where it will stay because I will not be going back to hospital to see the neurologist ever again and will rely on my GP and nurse for their help.
A review of an MRI scan ten years ago confirms that an attack then was the start of MS. My GP has reviewed my medical records over the lat ten years and can pinpoint several episodes, which, with hindsight, are attributable to MS too. I was sent away from the same hospital witha diagnosis of stress!!! Despite an MRI scan clearly showing the classic signs. My GP says that MS was diagnosable back then. Wonder if this has anything to do with the neuro’s attitude towards me??!! She disregarded all of my symptoms bar the facial numbess and told me that my account displayed inconsistencies!! Despite me having had the exact same symptoms from the very beginning.
My first thought was WOW! now that’s what I’d like to see happening everywhere in the UK! But then we come to the rest of your post. Oh dear
Hopefully you caught the neuro on a bad day, but if you aren’t prepared to give her another chance, I hope you will see a different neuro in the future because it can be really hard to get the right treatment without one.
I’m assuming that when you said you were diagnosed with stress, you are talking about years ago? Because reversing an MS diagnosis would have to be done with a lot of confidence (never mind an explanation of how the hell stress could cause lesions!).
I’m wondering whether or not this neuro is an MS specialist? I would hope that an MS specialist wouldn’t be so dismissive of symptoms and would have offered you some meds or therapy to help with them because there are plenty of options!
As far as the lack of a diagnosis years ago goes, the criteria for diagnosing MS were changed only a couple of years ago, making it much easier to get a diagnosis. Prior to this, someone often needed to have at least nine lesions visible on what was far from brilliant MRI; these days people often only need two. Unfortunately, neuros do not like to contradict their colleagues and I’ve heard of plenty of occasions where good evidence has been ignored so a colleague isn’t embarrassed It is plain stupid to be doing this now you have been diagnosed though so I can only assume that this neuro was either incompetent, out of her depth or having a really bad day.
I do hope you will try again! There are some good ones out there
Yes the stress diagnosis was after the MRI scan 10 years ago - which I have now found out showed lesions and according to GP should have been diagnosed then.
I have met this neuro (who is a general neuro) on two occasions now and both times have felt embarrassed, belittled and humiliated at worst and at best like I’m imagining it and losing my mind!! So no, I won’t be going back and have in fact cancelled an appointment with her for Friday. My MS nurse is aware and is looking to make a referral to a specialist MS centre in Newcatle but unfortunately is off sick so nothing will happen until she is back. I can’t praise her enough. She has been brilliant.
The only meds that the neuro offered me is ropinerole for restless leg syndrome which I patently don’t have - I know this because my husband does!!! And it’s totally different to the dire spasticity that I suffer from. But given that she’s the expert I took them for a week before I stopped because they made me feel so sick and dizzy. Dizziness is onr of my primary symptoms. When I re-read the advice leaflet that comes with them, it clearly says that a common side effect affecting more than 1 in 10 people, is dizziness. Which belies belief that the neuro prescribed them in the first place - or as I suspected just wasn’t listening. My GP has prescribed stemitil which helps a lot - but the neuro told me to stop taking them as they would not help!!!
I just want to get back to being me - driving, working and being independant and whilst I accept that I am impatient for this to happen, frustrated with myself and probably putting too much pressure on myself, surely after 12 weeks off work things should be improving?
Unfortunately, dizziness is a common side effect of the kind of meds we take. Thankfully it usually wears off after a few weeks, but it can be hard getting there!
Stemetil is often prescribed for MS-related dizziness/vertigo so I don’t know what the neuro was talking about. It does sound like she needs a refresher course in MS!!!
It would be worthwhile asking your GP for a referral to neurophysio - there are exercises they can show you that can help a lot with vertigo. They may also be able to help with your spasticity.
Do try and accept that you will get better when you get better - there is no rushing it And pushing yourself will only make it take longer, so don’t!
Hi Karen, The dizziness came as the first symptom before diagnosis and I was given stemitil as the gp thought it was the latest bout of labrynthitis of which there have been many. They make a huge difference so I have decided that despite the neuro telling me otherwise, I am going to revert to taking them when needed. I spoke to the ms nurse yesterday who is going to look into re referring me to another neuro but because of where I live it will have to be at the same hospital. So to be honest I’m not sure about it. I think I’ve lost all faith. But the nurse was adamant that I’m gonna need a neuro whereas of course I know otherwise coz a; I haven’t really got ms and b; once these symptoms go, which of course they will, I will be well for ever and ever!!!
