Just Want To Know For Certain

Hello everyone

After weeks of looking at this site and reading the forum posts I have finally plucked up the courage to write a post and I apologise if it’s something that has cropped up on the forum before and been dealt with then

I began having symptoms of dizziness, blurred vision, nausea, vertigo, back ache etc towards the end of May this year and, after consulting an out of hours doctor, I was diagnosed with Labrynthitis. He gave me some tablets to help with the symptoms and told me to take a few days off work to recover.

After a week I began to notice that, in addition to the initial symptoms, my speech became slurred, my vision became double (watching Euro 2012 with 44 players on the pitch isn’t fun at all), I was suddently tired and lethargic all the time and the muscles in my face were twitching continuously. My mum suffered with a mild stroke years ago so that was the first thing I thought it could be - I immediately went back to the docs.

My GP told me she was referring me to a Neurologist “for my own peace of mind”. I asked whether I was having a stroke - she said no. I asked if it was a brain haemorrage - she said no. She said it was more than likely Acute Viral Labrynthitis but for me to still see the Neurologist. I received a sick note from the doctor to send into work.

My appointment with the Neurologist came through really quickly and my dad was good enough to take me there. During all the physical tests he did he didn’t really say much! I asked him if it was a stroke - he said no. I asked him what it was and he said he wasn’t sure. He said he wanted me to go for an urgent brain mri scan and that I should go back to see him the following week. Alarm bells started ringing!!!

Monday 18th June came round and it was like seeing a completely different Neurologist. I sat in his office and he showed me the mri images of my brain, showed me where the scarring was and told me it was mild MS (I have scarring on the frontal lobe and brain stem). Both my dad (who came with me) and I were shocked, but I was also relieved that I wasn’t going mad. His nurse gave me some booklets on MS (even though they were quite old) for my family and I to read.

He told me he would refer me to his colleague (a Consultant Neurologist specialising in MS) who would request more tests for me, but in the meantime I was to have 3 days of intravenous steroid injections to try and alleviate some of the symptoms. I asked whether I could return to work and he said at this point in time not to. I then had to tell my family, friends and employer what the Neurologist had said - you can imagine my family took it quite hard.

A couple of weeks later I had the appointment with the 2nd Neurologist. My daughter (who’s nearly 21) came with me for support. He said he wanted me to have 2 spinal mri scans and a VEP Eye Test. I asked whether it was definitely MS and he said he wasn’t sure!!! I asked whether the other Neurologist had got it wrong (even though he had written a letter copying my GP that clearly states he’s diagnosed me with MS) and he said probably not but he just wanted to make sure. I think I just wanted him to say “yes it’s MS, you have this type, go and have your steroid injections and you can go back to work the following week” (can you tell I’m quite impatient!!!)

I have been off work since 27th May and unable to drive since this date also. I am a very independent woman who hates asking anyone for help and my poor dad has been my personal chauffeur during this time. I am desperate to get back to work (I work part time at a nursing home as a receptionist) but due to the symptoms I don’t feel I can perform to the best of my ability (although it’s only the fatigue and back ache that are still troublesome - the other symptoms seemed to have died down). My GP has been fantastic - when she received the letter from the 1st Neurologist she phoned me apologising for her mis-diagnosis and asked me to go and see her to discuss how I was feeling further.

My GP suggested I contact the local MS Nurse who, when I spoke to her, told me that the letter from the 2nd Neurologist stated “not conclusive MS” and because of this she was unable to make an appointment for me to discuss symptoms, ways to cope, how I’m feeling etc!!! The only good thing she suggested was for me to look at this site and request some of the publications (which I have done )

Sorry it’s going a bit

The company I work for have been fantastic, although as it’s now getting to nearly 3 months off work sick they are beginning to wonder when I’ll be returning. They have mentioned going back on a phased basis, maybe do an hour or so here and there to get me back into the swing of things. My only concern is the fatigue - it’s like I’ve been punched by David Haye full in the face and knocked out when it strikes!

Has anyone had a similar situation like this - one Neurologist giving a confirmed written diagnosis then another not wanting to confirm until every last test is done??? The MS Nurse not wanting to know until it’s a conclusive diagnosis???

I’ve completed the DLA forms and critical illness claim form (thank god MS is listed as an illness I can claim for) but I feel, because the 2nd Neurologist didn’t say it was definitely MS, the forms have been completed a bit prematurely.

I’ve been reading the posts on this forum and it’s nice to know I’m not alone regarding the feeling of being stuck in Limboland - I just want to get back to some kind of normality!! I hate being off sick, I hate not being able to get in my car and drive here, there and everywhere and I hate being reliant on others!!! Not only am I impatient but I’m also stubborn hahaha!!

Thanks for reading and any help, advice or tips you can share will be appreciated.

Pen x

Hi Pen, and welcome to the site

I could be wrong, but it sounds like the first neuro jumped the gun. MS is normally only diagnosed when a patient has had at least two attacks (it sounds like you have only had this one?) or has had a year of worsening symptoms.

When someone has had only the one attack, but has the right number and location of lesions on their MRI scan, they are normally diagnosed with “probable MS”. The diagnosis is changed to MS if the patient has another attack or their symptoms are recognised as progressive.

I’m also a wee bit surprised about the MRI results. The frontal lobe is an area of the brain that doesn’t normally “count” for an MS diagnosis. To be diagnosed, the patient needs to have lesions in two MS-typical areas. If your lesions are frontal lobe and brain stem, only the brain stem normally counts - which means there is only one area that counts for you and puts an MS diagnosis more unlikely.

So, from what you’ve said, the second neuro is doing the right thing - getting more information to make sure. This is really important because there are actually loads of conditions that can cause both your symptoms and your lesions. And some of these are treatable!

As far as the MS nurse goes, I have heard similar before - they are so overstretched that they can’t accept anyone that doesn’t have a definite diagnosis. I’ve also heard of MS nurses who take on people with probable MS so I guess it’s another example of the NHS postcode lottery :frowning:

Not sure I can offer much advice about work, other than to say that you should take it slow. Hopefully the improvements in symptoms will continue and you’ll be able to get back to doing all you used to. It’s still early days.

Karen x

Hi Pen,

Excellent advice as ever from Karen.

My neurologist experience has not been similar, but I’ve been off work now 7 months and am only getting SSP, so wanted to write to you from the work perspective.

As Karen says it is still early days. I have days when I am brighter and days where I am like a jellied eel. To echo that I have days where I am sharp as a razor and days where I’m easily confused (think its when the fatigue is going to/about to strike)

As much as I feel weird never having been off work for such a huge length of time, I’ve never felt so physically odd so it obviously takes a long time to get over.

I am having to face up to the fact that someof the physical issues I have been left with, may remain and am now starting to find ways to work around them. I guess that will prepare me for a phased return to work, but just now - a return feels quite a long way off. I have no firm diagnosis, and am starting to accept that.

However, I hope that this very confusing time becomes clearer for you soon.

Very best wishes Gillian

Hi Pen

Im not diagnosed so cant make any comment about the tests you are having etc. I am sorry you are having a tough time recently though.

I just wanted to comment about the MS nurse. My neuro put me in touch with MS nurse after my first appointment with her (July 3rd) , and whilst nurse was lovely and spoke to me on the phone for about an hour, she said she usually only sees people after a definite diagnosis to go through treatment options, and to put you in touch with other people such as physio, counsellors etc. She said it is highly unusual to be referred to her without a definite diagnosis so she wasnt really sure what she could do for me in clinic, but she could listen to me on the phone. She then said she would phone me every 4 weeks to check on how I am and to suggest meds to ask GP for to help with the many symptoms I have. She was great but doesnt want to see me unless (or until) I get a diagnosis. Neuro and GP have both said it is highly likely I have MS (given my symptoms and on examination by neuro), but until all the tests Im having are complete, I have no diagnosis.

I am not allowed to drive at the moment too so I know how frustrating it is to be reliant on others for help etc. It feels as though all my independence has gone in one foul swoop :frowning: I cant go to work as Im still twitching, jerking, very unsteady on my feet, and my eyesight is rubbish (has been since April 2nd) etc etc., so I am bored being stuck at home, skint as my daughter (17) and I only have ESA to live on (but I have now applied for DLA on the advice of neuro and GP), and I feel dependent (something I havent been since I left home at 16!). Limboland sucks I know, but I keep telling myself that I will hopefully find out what is wrong with me soon, and WILL then be able to take control of my life again :smiley:

I wish you all the very best Pen, and hopefully your health will improve very soon.

Paula xx