I started of with a tremor in my right hand now they are exploring ms, nmo amd mog. Ive 5 lesions including left eye optic neuritis which is high at 250. They were swaying towards more ms but because my leisons are in my brain stem they say thats not a normal place for ms to be! I cant swollow food unless its moist (sorry I hate that word too) I walk like im drunk, I cant see out my left eye (on week 4 no improvement) and i had steroids via infusion 4 weeks ago so they wont do that again, not that it helped anyway. Im currently off sick from work and its not looking likely that il be able to go back full time (12hr shifts as carer). So yeah thats me. Hi
Its just so frustrating, im glad they are doing everything to make sure they diagnose me with the correct thing but I just feel like its taking so long and because im split care between 2 hospitals its even slower. Im inpatient and just want answers so I and we as a family can go to coffee mornings and meet up with others for advice and I can tell work so I can get back. Im inpatient lol
Ive had blood tests, lumber puncture, steriod infusion, 6 mri with and withoit dye,ct scan tomorrow im currently on month 4
I hope someone will respond to you who has recently been diagnosed because I have had MS for over 30 years, and back then things were really different. There were no medication for it, no MS Nurses and there were only a few MRI machines I had a 4 hour round journey for one. So as you can imagine it took over 5 years from first symptom to knowing what was happening. I was am sure things have improved greatly since, but it’s better to have the correct diagnosis and medication.
I really do understand how frustrating it is, but hang in there, hopefully they will have some answers for you shortly and know which medication is best.
You have still got a long road full of uncertainty to go unfortunately.
Mine is also brain lesions and some other bits n bobs (nothing on my spine so far). I was diagnosed with RRMS in March this year, 3 years after it all began for me (mine may actually have began 30 years ago but, got lively around 4years ago)
You’re already a good way through the testing process - the bit that will be taking time is the multi disciplinary team meetings that involve so many specialists. It is hard to be patient at first (believe me, I know) but, we do just have to learn to relax and take care of ourselves while they work to come up with an accurate diagnosis in the background.
While that is happening, you can still hang onto some normality and be as happy as possible.
Do still have coffee mornings with friends and family. Do keep chatting about what you’ve got going on with those close to you .
The comments from Pam are good - waiting around for an unpleasant diagnosis is a lonely time and, this forum is a good place full of good people so, do keep popping in and talking .
You probably are going to need time off of work at some point so, it may be better to let them know how your getting on as you move through the process.
I was medically discharged from my career before my diagnosis because of the way things were developing for me.
I’m now in another waiting game full of tests and vaccines etc as I slowly move towards starting a disease modifying therapy.
So today I got my diagnosis of multiple sclerosis, now to await the appointment with the ms nurse. I feel relieved now I have a diagnosis but overwhelmed with it at the same time. Now to find the forum for medication help
Hello. That’s always a bit of a shocker, getting the formal diagnosis, even when you knew it was a possibility. I can well believe you feel overwhelmed - it’s a big diagnosis to get and raises at least as many questions as it answers.
Quite honestly, I was a howling, snotty mess for weeks and far too much wine was consumed, and I’m sure there are better ways to deal with the news, but I didn’t find them. Just don’t be alarmed if you’re a bit wobbly emotionally - that really is very normal. Above all, I hope that your symptoms are starting to ease off and you’re getting more function back - nothing better for morale than that.
I am sorry that you are now definitely one of us in the club that no one wants to join.
Hey Nicola. I am both sorry and relieved to hear this, on your behalf.
Be gentle with yourself for the next few weeks and months. My diagnosis was last December, one year after a relapse, and i still haven’t processed it. You may swing from here to there over the next few weeks, but try to live steady and gently and look after yourself in the basics: food, sleep, exercise where possible. Chat to those around you and use this forum too; it’s a great resource.
I hope your symptoms alleviate and you can find good support networks. If you need a chat to discuss the strange few months after diagnosis, don’t hesitate- i remember feeling like life had collapsed when the neurologist said those two words, and the following months have been an emotional rollercoaster. But it need not be as doomy as it may feel.
I’m not sure what to say so, congratulations on finding out for sure what’s been going on and, welcome to the party I suppose. As always - wise words from @alison100 and @jamesdjgale
When this all began for me I was told that MS is different for everyone - like a few others, I’m still trying to figure mine out - sometimes not easy when you’re this stubborn.
You’re on this same journey now but, do remember that you will still be you - nothing can change that
Do keep in touch here. This place is full of nice people that are willing to chat whenever you’d like to.
Best wishes with your MS nurse, mine is lovely.
Try to look after yourself - you’ve hit some new bumps in the road but, you can deal with them.
Ive decided to go with Ocrevus as neurologist more recommended that but its also i feel safer for me and ive been told il have my first treatment within 12 weeks due to having (RES-RRMS) so although no letter yet for ms nurse i understand it takes time im just inpatient.
Thank you all for your replys and telling me how it effected you. This site is great, just wish there were support groups near me, unfortunately sounds like there used to be but not any more which is a shame (bury st edmunds)
I have had ms for many years and have gone from sticks walker to electric wheelchair but this has all been a very slow progress, so in that respect I have been lucky I feel.
I do want you to know that if you are eventually diagnosed with ms there is still a very good life to lead, perhaps different to what you thought, but still enjoyable.
Stay positive as worrying about it has a negative affect on you. Take care and look after yourself.
Thank you Pam for your reply, your kind words do mean a lot and I’ll do my very best to stay positive. As you say, the stress and worry won’t help things.
To be honest with you Jk32, its been ok. I done so much research before I was actually diagnosed that I was prepared for it. The thing that is effecting me is the constant waiting for appointments and the fact ive lost my driving license due to optic neuritis being so bad ive lost vision in my left eye. What ive found is Neurologist sugar coat things. Ie I was told optic neuritis will only last a few weeks, where as in reality it could be permanent, I only found that out by sites like this. So im unable to work, so my mental health is taking a beating and ive certainly gained a few pounds. I also learnt that nicotine can be a problem so im stupidly trying to give up the vapes to, currently failing at that though lol
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