To be terrified of neurologist tomorrow

[Axlcat]

Under investigation for MS. Had an incident of loss of vision in October and an MRI which has shown lesions on my brain. Tomorrow is my first neurologist appointment and I’m terrified.

What can you do tonight to take your mind off it? Watch comedy on YouTube? Cook something you really love?

Sorry to hear this.

It's normal to be afraid but perhaps the worst you're thinking will never happen
. Even if it is MS there are ways of managing it and you may be able to live without too many symptoms. There are new treatments all the time. I have a friend who was diagnosed about 3 years ago with MS and she's been ok xx

Sorry you are having health problems.
I hope your doctor is kind & helpful tomorrow.

Maybe you could look at houses for sale online as a distraction tonight.

I remember going to DH's first neurology appointment when he got his MS diagnosis - it was very scary, although I don't think we had grasped what it entailed at all. Scary as it is, you will know one way or another - the not knowing was awful. Then you can deal with whatever you're told. Be kind to yourself, indulge in something you love - food, a book, tv, a film etc? Hope it's ok.

Thank you mantarays. I’m trying to keep myself busy. I just can’t believe this is happening to me. I’m so frightened of what it could all mean for me and my poor OH. I’m only 39 and so much to do yet.

My mum has MS. She was diagnosed after an episode of optical neuritis, which I imagine is what you're thinking?

I should point out that this was more than 30 years ago and she already had a few other things happening which were signs of MS. She's now well in her 70s and still doing pretty well other than occasional weakness in one leg. Certainly living as well as many people her age, no major mobility problems, passed fit to drive, etc, etc.

I'm sorry if my telling you that is more worrying than reassuring but as a previous poster said, even if it is MS it doesn't always mean it will have severe symptoms.

Fingers crossed for you OP.

Oh you must be so stressed .

There are a number of different medications available for MS these days. My DM was diagnosed around 15 years ago and has been on medication ever since. She’s now almost 60 and you would never know she has anything wrong. She still works full time, has several holidays a year, and is fit healthy and active. She has had a few relapses over the years and has some mild symptoms that bother her in her day to day life (eg she tires a bit more easily and she needs glasses), but a diagnosis of MS does not have to be life ruining. Hope you manage to get some sleep and the appointment goes well tomorrow. If you’re struggling to switch off and have questions running through your mind it might help to scribble them down so you remember to ask the neurologist.

I have MS.
The first time it was suggested I assumed it meant wheelchairs etc but the prognosis is not as bad as it used to be. Lots of people live ordinary lives with MS.

@axlcat I'm sorry to hear how worried you are. So many other conditions can mimic MS, the symptoms that you are experiencing could be absolutely anything. Even if you did have MS, there are lots of disease modifying drugs these days which slow down MS and can dramatically slow down its progress. My mum has MS and even without treatment, 30 years after being diagnosed, her mobility has been affected somewhat however she lives completely independently and doesn't require any input. She is 64 and doing great.

There isn't really anything I can say to alleviate your fears so I'll just let you know that you're in my thoughts

Thank you everyone. It’s kind of you to share your own experiences of having or knowing someone that has MS and it’s helped a little. I am just hoping I have a mild kind rather than aggressive kind as I do know it can be managed in some cases. We’d been going through IVF and the optic neuritis happened just after our second failed round. Interestingly there is a link between a fertility treatment and MS “attacks” so I’m pretty sure I have it. I’ve been pretty good at not dwelling on it and getting on with things but i guess anxiety is high as the appointment is tomorrow.

I have MS, I was diagnosed 10 years ago (im 37 now) after optic neuritus, I remember being petrified.
I was diagnosed with Relapsing remitting, which is the most common type, its not progressive, yes I've had relapses and I have weakness in my legs, but it didnt ruin my life like I convinced myself it would.
There are lots of types of medication and lots of support, if you are diagnosed you will have a team of nurses who are a phone call away and are specialists

If you need someone to talk to please dont hesitate to PM me
I'll be thinking of you tomorrow x

Good luck Axlcat

@Newernewist thank you so much - I think I’m scared mostly that I’ll have progressive and wondering if there is more chance of that because it’s quite late for me to be diagnosed. Just have to stay positive and hope for the best. I may take you up on the offer of a PM.

@partygamer thank you so much

Thinking of you this morning. I have an urgent neuro appointment booked for Thursday. The waiting and not knowing seems to be the worst part. I hope the appointment is early today so you can get it out of the way x

Good luck today seeing the neurologist. Hope you're doing ok.

Good luck!
I have MS and there are so many treatments available. I understand your worry but I have rapidly evolving, severe MS and there’s a treatment that I have which has slowed it down.
I hope it goes ok xx

@Axlcat - I was diagnosed with RRMS in my 40s so don't despair on that front. Looking back I can spot flare ups well before that but they weren't obvious. I suspect my diet helped.
Good luck today.

Hi OP. My mum has MS it doesn’t mean life is over 😊 she was diagnosed at least 15 years ago (if not longer) so has lived with it for a long time. She’s on medication which has reduced the attacks - it currently affects her balance a little at times, and she has numbness in her hands. It doesn’t really affect her day to day life as much as you think when you hear the words MS. Wishing you all the best for your appointment today

@axlcat I hope it went well.

Hi all. Thanks so much for your support. I have indeed been diagnosed with MS and have been told it’s relapsing remitting. Not a shock as I had strongly suspected it. They will start me on drugs immediately in the hope it slows the attacks. My neurologist was fantastic and is one of the leading MS specialists - I feel I have confidence in him and reassured that lots can be done. Next steps will be an appointment with the MS nurse to discuss meds.

Hi OP. Not good news for you but you will be ok. Some bad days and weeks are ahead with the RR type but there's a lot they can do now. It's not going to be plain sailing, you have a diagnosed condition now which you've to live with but now you that you know and the doctors can help you, hopefully you will see improvement in the suffering you've had ♥️

@Axlcat

Not the best diagnosis but I have a friend who has relapsing remitting ms and she’s recently been treated with chemo? Seems to have worked really well for her.

She also lives a great life and doesn’t let it keep her down.

Be kind to yourself

It is good that you now have some information you can work with.
Best wishes to you as you manage your MS.

Ah that's a shame but it's the type where most of the money and research is. Take some time to process it. My MS nurse came out to the house to meet me initially which was good.
All the drugs have terrifying sounding side effects but they know early signs - I have regular blood tests to monitor for them - and they'll give you choices and recommendations. Good luck :)