Hey, so I’ve not posted on here in quite some time, although I come on fairly regularly to read other people’s posts.
I was diagnosed CIS in March and am due for a repeat scan and neuro appt, which is booked for mid-sept, and fast approaching. I’ve been tying so hard to put the thought of MS to the back of my mind, but every time something’s feels not-quite-right I find myself wondering if it’s something actually wrong.
I experience fairly regular periods of dizziness, but not vertigo type dizziness, more of a wobbly feeling stemming so from my legs. Like I can’t gauge how far away the ground is and when I step I feel off balance and in turn dizzy. I get the odd tremor in my hand and once in a while feel like my fingers won’t do what I want them to do. And most recently I’ve been getting this rather annoying (but not entirely painful) burning feeling down the back of my right calf and also down the back of my neck/shoulder, also on the right side. My right leg often feels heavy and a bit like I’m trudging through mud, I find myself stubbing my toes on occasion bc I don’t seem to life my foot enough off the ground.
Im worried about what the scan and neuro are going to say…my first MRI back in Dec 17 showed 2 small lesions both ‘highly suspicious’ of demyelination…
I don’t want a diagnosis of MS, but I’m also afraid of being in limbo for ever…
It’s a horrible place to be, limbo. So I always understand when people are half dreading, and half wanting a diagnosis of MS. In your situation, there would be positives to a diagnosis. The most important one of course being access to disease modifying drugs (DMDs).
You do seem to have a range of problems that could be helped with some appropriate drugs or referral to other services. When you see the neurologist, you should have some details of the symptoms you’ve experienced. Even if you don’t get an MS diagnosis, you should be able to get help with symptoms.
So make sure you write some notes of what has happened and when. Note when things have improved, or if they just stay the same. Even if a lot of the things are staying the same, this doesn’t mean that if you get a diagnosis of MS, it will be progressive, often the nerve damage we suffer in relapses either takes months and months to remit, or just doesn’t ever remit. For example, my first relapse was 21 years ago. I never felt my feet properly after that, and yet I was RR until relatively recently.
Let us know what happens. And obviously if there’s anything you want to know, we’ll always try to help.
So I’ve just come back from my follow up appointment. I suppose it was much as expected, but in a way better, but also worse…After my first appointment for some reason I actually left feeling a bit deflated. The dr hadn’t really given me much of a chance to talk / questions, and hadn’t seemed open to hearing what I had to say.
This time he seemed more receptive to my questions, which was great. I felt much more comfortable talking to him and asking questions, but I didn’t like the answers I got - even tough they were probably the answers I deep down expected.
I asked whether my lesions could be caused by anything else, and he said very unlikely due to their locations, MS is the most likely cause. He told me it is possible to have lesions / new lesions without new symptoms, so although I’ve generally been OK the past few months, there could be more going on inside my hear than I know.
I am being referred for another MRI, this time cervical and spine. Current lesions are cervical, but I’ve not had a spinal MRI yet. He thinks chances are there will be new lesions given the amount of time that has passed since my last scan, and if so, I will be referred to the MS clinic to consider DMDs, etc. If no further lesions (fingers and toes crossed!!!), I’ll stay on the neuro service and will have regular repeat scans and appointments, for as along as we decide is necessary…
I’d like to hope for no new lesins, no new symptoms and for all of this to just go away, but even the dr thinks that’s unlikely, albeit possible. He thinks I have a high chance of converting…
And so I am back to waiting. Waiting for my MRI appt to come through, waiting to have the scan, waiting for the results…
I hope that the pluses of an actual diagnosis outweigh the negatives.
At least your neurologist is taking action, doing more scans and discussing DMDs. And was more approachable this time. Sometimes a bit of familiarity with a neurologist helps immensely.
It’s a bugger that you then go back to the interminable waiting … for the next scans, the next appointment, blah, blah. You get so fed up with waiting I know.
Thanks Sue. You’re comments and support are amazing!
I think it was talk of dmds from the dr which actually started to make this nightmare seem a bit more real.
Ive been lucky so far in that symptoms have been minimal and mild so I’ve managed to push it all to the side (not quite back of my mind). And I’ve perhaps even deluded myself to thinking it might actually all be ok. When I suggested that to the dr he didn’t quite laugh at me…but didn’t seem hopeful.
I don’t want a diagnosis, but if it helps me to move on then I’ll take it.
the not quite knowing, worrying and waiting is torture.
and if dmds are available to me, I am all for getting started!