So I’m expecting my Brain MRI results soon. But I’m not sure whether to to be happy if they show no lesions as I’ve been reading that this has happened to a lot of people who have then gone on to get a diagnosis of ms years later.
My symptoms started back in mid may with dizziness. This has been constant. Numbness started on my right leg early July, this has now spread to my entire RHS. In the last few weeks I’m noticing that I get tremors. This affects my legs, arms and even my head.
I also get little spasms that ping all over my body. Feeling really scared that I’m getting new symptoms and the ones i started with are not easing. PPMS?
I’ve got my neuro appt on Tuesday so just wishing the days away till I can talk to him. Tho seeing posts saying how often they aren’t able to diagnose has me worried whether it will be of use.
Ms. Winnie, this is a difficult time for you and the people on this site, regardless of situation, are here to listen to your questions or concerns, and offer comments if possible. I am 74 and still need a little “hand holding” or a hug on occasion.
Just two days left till your appointment! Hopefully you’re coping with the wait!
I don’t think you should worry too much about symptoms hanging about. Supposing you are diagnosed with MS, the most likely subtype is relapsing remitting. What happens to many people is that a relapse takes so long to recover from we worry that our MS is progressive from the outset, or if it began as RR, that it’s become progressive.
An MS relapse can take so damn long to recover from, remission seems impossible. But it can take months for remission to happen. I remember back to my earliest relapses, I thought I’d never recover. Months passed and one day I’d suddenly realise my (eg) pins and needles, numbness, eye sight, other symptoms were feeling better.
In the early days, I had pretty much complete remission from relapses. For the first 10 years, between relapses I was completely able bodied and didn’t look different to anyone else without MS.
I’ll hope to hear from you later in the week that you’ve had a good appointment and that you have answers that will make sense to you.
Thanks for the reply. I am just about coping with the wait thank you. In the meantime I’ve had the results that my brain scan was normal.
I suppose my fear is that being 48 puts me in that higher age bracket where PPMS is more likely.
Really hoping you’re right that in that regard and that I see things get better soon. Feeling reassured by your comments that relapses can last a long time tho.
I’m so grateful for the patience and support from you guys on here.
It must be both a relief and a worry that the MRI is clear. Perplexing really. When you know you’ve had neurological symptoms but no clue as to what’s caused them.
Maybe you could ask the neurologist on Tuesday for a spinal MRI?
I’m assuming it’s a phone appointment? If so, have you had a neurological examination? If it’s an actual physical appointment, at least you can hope the neurologist does an exam. If it’s a phone appointment, perhaps you could ask how you could have an examination?
You could also ask if it’s not MS, what else could be causing your symptoms?
It would be an absolute pain in the behind to end up still in limbo. But unfortunately, that might yet happen. New Covid compliant virtual appointments are no substitute for face to face.
Luckily it is an actual appt. So presumably he will do an examination. I’m seeing him privately so was thinking maybe I could request a spine MRI?
I’ve been keeping a diary of everything in terms of my symptoms, as was suggested by someone on here before, together with my medical history.
I’ve also had a referral from my optician based on some recent vision problems so I’ve got fairly comprehensive information for the Doctor when I see him.
Yes, the brain scan results have caused me mixed emotions to be honest. Tho surely PPMS would have shown something on the brain scan?
Anyway, not long till I take the next step and hopefully get closer to a diagnosis. Really want things to happen soon as Covid is going through the roof again.
I’m glad it’s an actual face to face appointment Winnie.
I really hope you get some clarity from the neurologist and come out of the appointment with a more positive feeling. A way forward, even if it’s just to have another scan and then see what happens next.
Just updating you following my appt today. The neuro was good. He did the usual reflex, muscle and eye tests and asked me lots of questions.
All seemed ok with the function test, so he said based on my symptoms and the fact that my brain scan was clear, he thinks my problems are due to FND.
He has advised a cervical spine scan, but more as a precaution. He will also be writing to my GP to prescribe some medications to help with my symptoms.
I have my next scan in a few weeks.
So, that’s about it for the moment. I am feeling reassured after today.
That sounds like it was just what you wanted/needed. An actual physical neurologist doing an actual physical examination and giving you some actual answers to your symptoms and worries.
It seems that there are many people with MS type symptoms that actually have FND.
Ultimately a good result. But still - feel free to continue posting on here for support and fellow feeling. We tend not to discriminate - people with MS’y type symptoms are people we have things in common with !
Aw don’t cry ! That was the sweetest post. Thank you. I do try and help newbies. The world is scary enough without MS / the fear of it. And believe it or not, it was less scary 24 years ago for me and my pre google diagnosed cohort.
Especially just now, where we’ve been restricted due to Covid and medical support is stretched to the extreme, a sympathetic voice, a safe place to talk, is invaluable.
!
! That was the sweetest post. Thank you. I do try and help newbies. The world is scary enough without MS / the fear of it. And believe it or not, it was less scary 24 years ago for me and my pre google diagnosed cohort.