Hello everyone. My neurologist called me this morning saying that my latest MRI scan revealed what could be MS and scheduled an appointment for later in the week.
My symptoms: I have been feeling dizzy and off balance for the past 4-5 months and feel fullness in my right ear as if I had water in it. Other than that, I have some neck pain and really feel out of breath during any physical activity. I consider myself a sporty and fit person so those symptoms have been hell for me. I don’t feel any numbness at all and I don’t get any swelling or trembling.
I’ve had a couple of different suspected causes. Initially, they thought it was an ear infection, then BPPV (positional vertigo), combined with some stress and bad sleeping habits. I’ve been doing a lot of positional exercises and been briefly on antidepressants but nothing helped. Later, from blood tests, they found that I have Lyme disease but it was deemed unrelated (which I’m still unsure about) and got treated with antibiotics. Still no improvement.
So then we get to now after my THIRD MRI scan which apparently revealed possible MS.
Everyone told me not to Google anything until my appointment, but I couldn’t help myself and found this forum along the way. To be honest, I’ve never been so scared in my life. On one hand, I’m kind of glad that finally, they found a cause and I can stop living in uncertainty. On the other hand, reading through the experiences of MS makes me very emotional and terrified of what could come.
To get to the point: (sorry about the long essay) What should I expect from my initial appointment and exams and how do I best prepare?
Thank you in advance for any comments.
Have a nice day!
DB
HI
I am in exactly the same position as yourself.
I had the feeling of being off balance for possibly 18 months and also the exact same ear complaint though it was in my left ear.
Investigations into my ear problem and possibly related balance issues eventually led me down the MRI path which unfortunately then came back with lesions to brain and spinal cord and consistent with MS. I would have been happier with a knackered ear to be honest !!!
I had no other symptoms than those mentioned but since the MRI and recent hot weather I have been struggling every day with heavy / stiff arms and legs with fatigue also.
It’s strange that these symptoms only started since the suspected diagnosis but it may just be coincidence that it has all happened this way.
I was also on antidepressants up to about 6 months ago.
ANYWAY ramble over.
I have my first post MRI appointment on Monday 2nd Sept with either my neurologist or MS nurse. The letter doesn’t say which, just neurology department.
I am like yourself terrified of the future and also what news Monday will bring.
I will however let you know how things go for me on Monday in case it is any help to you. Sorry I can’t be of any other useful help for you. I am still quite ignorant on all this MS and keen to learn but on the other hand I’m also of the opinion that I would rather not know.
I am a self confessed coward when it comes to anything medical related.
I will post my findings on Monday just to give you an idea of how I will have been dealt with.
Hopefully somebody will reply with something more helpful before that.
All the best
Dave
Hi DB Cooper. Just seen your post. One of the things you might have picked from reading one the web is that everyone’s MS is different. However, just to say that I was diagnosed about 18 years ago. Like you, I was petrified and saw a dismal future for myself. I’m not saying that life is a bundle of joy for me these days, but around 18 years after diagnosis ( following an episode of Optic Neuritis) and at age 70 , I walk with a limp but can walk for 15 or so minutes before my right leg and ‘my brain’ struggles, was up and down ladders last week clearing gutters from our bungalow and pruning hedges. Have some bladder problems but have only once ‘wet myself’ seriously, get a bit tired maybe a couple of times a week. A few other annoying but not life changing symptoms as well. I am only one case but for me and I’m sure many others, MS isn’t the quick route to a life in a wheel chair it used to be.
Having MS is very scary and you never really know what the next month, next year might bring and yes, it can be depressing. Overall though I still enjoy life and make plans.
If you are given a diagnosis of MS then I hope my story has given you some hope.
In terms of your appointment, it’s a while since mine but basically I was asked about current and past symptoms , might have been asked to walk heel to toe in a straight line and similar balance tests, maybe other thing as well but I can’t remember. It’s a good idea to take a note of your history of symptoms with you plus a list of questions you might have. If you can, take someone with you: I found the shock of diagnosis and fear of MS a bit overwhelming and it was hard to take in everything the neurologist said. A second pair of ears and a calmer mind can help with recall.
All the best
Hi Dave, thanks for the comment. Helps more than you know to hear your story and how similar the experience has been so far. I know exactly what you mean about the heat. I’m sweating, stumbling and so tired anytime I go out when it’s hot and sunny.
Reading some of the other posts, I can’t help but feel like a crybaby complaining about issues that sound so minor compared to what others are going through. There’s still a glimmer of hope in me that it’s not actually MS and just a weird combination of BPPV and Lyme.
I actually had my first post mri neurology appointment today and they referred me to a specialised MS centre/clinic (don’t know if you have the same ones in the UK as here in CZ) right away. Got advised to visit the same day. I then travelled for 3 hours to be told that they don’t take any new patients currently. So I contacted a couple more clinics and hopefully one of them will give me an appointment in a reasonable time.
Anyway, I really appreciate your comment and my thoughts will be with you on Monday. Do let me know how it went!
Best regards,
DB