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.