I have been experiencing Neuro symptoms for well over two months now. I lost mobility in my left leg and have patches of numbness on my torso. It also feels like there is a hand constantly pressing on my waist. I saw a great neurologist last week and had an mri on my brain and spine on Sunday (yesterday). I have just had a phone call to go and see the neurologist on Friday. What’s worrying me is the unit I’m seeing him in is a day unit for MS patients. I guess what I’m asking is has anyone had a very rapid diagnosis? As what I gather is that diagnosis takes months, maybe years.
Hello Jem
Some people are diagnosed very quickly with MS, and others wait months or even years for a definitive diagnosis.
If you are in fact diagnosed on Friday, yes it’s fast, but not unheard of. And you shouldn’t take the speed of diagnosis as any indication of disease activity or severity of disease. It really does mean just that you’ve been lucky (?), or unlucky (?) with a speedy resolution to your initial symptoms.
However, the neurologist may still take a ‘watch and wait’ approach to your prognosis. Ie. s/he may not prescribe disease modifying drugs (DMDs) initially. These are supposed to reduce the number and severity of relapses.
It’s possible that you have an initial diagnosis of a clinically isolated syndrome (CIS), and while there are some DMDs available for CIS, the neurologist may prefer to see if your experience is a one off and to hold off prescribing until they know for definite what is going on.
Let us know what happens.
Sue
Thank you for replying. I am very anxious and it helped to write it down and see someone’s response. I am just shocked and of course very grateful at how quickly things are moving. Although I have a feeling this week is going to go very slowly for me. MS didn’t cross my mind Until I googled my symptoms and could tick the box on about every symptom of ms. I had a patch of numbness on my leg in 2016 which I saw the gp about, they were supposed to refer me to a neurologist but as the symptoms went away I never thought anything of it again until now.
Hello again
Try not to worry over the next few days (yes, I know that’s pretty much impossible). Assuming the numb patch on your leg was a first sign of incipient MS, then it’s likely that if it’s MS, then it’ll be the relapsing remitting variety. And the good thing about that is that there are lots of disease modifying drugs (DMDs) available to reduce the frequency and severity of relapses.
If you have someone you trust to come with you on Friday, it’s a good idea, a partner, friend or family member, perhaps. Sometimes an appointment sparks off an attack of ‘neurologistitis’. This is where you’re having a perfectly sensible conversation with the doctor, thinking you’ll remember everything that’s said. You leave the room and immediately have to ask ‘what did s/he mean by …?’ And ‘what does X mean?’
If the neurologist says anything you don’t understand, ask for clarification. Honestly you won’t look stupid. Write down anything you need to remember later. And don’t forget to ask what happens next, regardless of the outcome.
Good luck.
Sue
So I have been told I have MS. it hasn’t sunk in yet and I’m sure I will be on here asking questions once I’ve seen the MS nurse and consultant.
Hello Jem
Don’t expect to get your head round it immediately.
You’ve had one hell of a shock to the system. To go from completely healthy to diagnosed with MS in a couple of months is startlingly fast. To go from no idea it might be MS to diagnosis within 5 days is even more startling.
You are going to be rattling with questions once you’ve accepted it’s for real. I can’t imagine it does feel quite real today, more like a bad dream that you might wake up from and everything’s back to normal. That’s what it might be like in a book or a film.
When you are ready with questions, worries, fears, concerns, anything at all, come back here. There are lots of us who have had MS for a few months or a few years or longer, it just happens this week that I’ve been around and answered you each time. But everyone who replies to you will try their damnedest to help.
Just remember, when you have questions, don’t rely on random google sites. Information from the ‘About MS’ section on this website or the MS Trust is reliable. Also, once you get an MS nurse s/he will be able to help.
We will do our best to help but shouldn’t be relied on too much because we only have our own experience to go by. But we are a friendly, supportive community and are always on your side. We’ll at least point you in the direction of reliable information.
Now, if you have a best friend, or a partner, or a mum you can talk to, do that. Talk to someone about what’s happened and how you feel. If you’re talking to a man, don’t worry too much if he wants to find solutions and can’t. Have a drink (if that’s your thing), but not too much. If chocolate is more your comfort, then indulge yourself. Treat yourself gently but kindly. Get some exercise if you can this weekend, even if it’s just a walk (unless it’s snowing and blowing a hoolie).
And take care of yourself.
Sue
Hi Jem and welcome to the club that nobody really wants to be a member of. I’ve not been around that long really and I’m no expert at all - CIS Jan 2017 and RRMS Dec 2018. I would echo what Sue says though about getting support for yourself and coming back here with any questions. Have you been given an MS nurse? He/she will be invaluable in helping you navigate all things MS including DMTs (disease modifying treatment). Have you been offered these? The MS Decision Aid is a good place to start in looking into them MS Decisions aid | MS Trust Be kind to yourself and don’t stress too much as this isn’t good for MS symptoms - easier said than done I know.
Thank you both. It’s a shock I am 30 years old and have a one year old baby girl. MS didn’t really cross my mind I was hoping it was a trapped Nerve. Thankfully I have gained most of my mobility back in my leg, although it’s not perfect. It’s just the numbness that’s getting me down at the moment. I have been referred to the MS nurse and seeing a consultant about treatment options.
Hi, big hugs at this scary time.
Strangly what helps me most is going to the gym (weekly sessions with the neoro physio, feels safe as there are experts there, I feel better some how after, ‘normal’ post exsersise muscular discomfort feels ‘good’.
I have found lots of positive improvement. Being real, it’s also been hard recently to ‘stay strong & positive’ when I had a relaps & a chunk of my improvements went backwards.
however what I feel MS has given me is finding my ‘strength’. It is so so scary !
i focus on the ‘use it or lose it’ !
good luck with finding a way to cope as a person.
big big hugs.