I can definitely say I’m in remission! Whether it’s ms or not. Although at this time I can’t see what else it would be.
Anyways, apart from pins and needles and falling asleep early, I’m pretty much me again! Am enjoying it whilst it lasts though! How long can till I relapse again?
I don’t understand your post.
Have you been diagnosed as having ms? RRMS?
Not yet but 3 docs think I have ms. I’m waiting for MRI results
Hi Mrs Kel
From reading your other posts, is it right that you’ve not yet seen a neurologist? The doctors who think you probably have MS haven’t seen any MRIs or other test results (ie LP) and yet they’ve managed to diagnose you with 'probable MS)?
I don’t want to dismiss your very real concerns about your neurological condition, but you know, through all of my relapses over 19 years, there’s not been a point where I’ve said ‘phew, that relapse is over’!
I know that we are all different and there are probably hundreds of people who will say they have had such moments, but with me it’s generally been more like, 3 months in I wake up one day and think, 'oh, that leg (finger/ON/hug feeling/etc) seems a little bit better.
It’s possible that what you’ve had over the past few weeks/months has been a one off. Or that it’s been an MS relapse and you’ve now gone into remission. Or that it’s been something completely different that is now resolved, or not. But without having a definitive diagnosis of MS, it might be a bit premature to decide that you’ve had a relapse that’s how remitted.
But regardless, it’s definitely a good sign that you are feeling a lot better. I truly hope that it has been a one off event, but if it is in fact MS, then it’s still a good sign and once you have a proper diagnosis, they’ll start you on a DMD.
Sue
Hi sue, sorry if my posts have confused you. I’m not great at getting words out. I’ve had a MRI, no referral to neurologist yet. Am waiting.
Although I said I feel like I’m in remission, I meant that in definitely over the worst. I still have permanent pins and needles, in still extremely fatigued. I have electric like pains in my legs.
I’m on painkillers every day and if I wasn’t, I’d be in a lot more pain. Even with them I wake up every morning very very stiff and in pain.
my hand eye coordination has gone and my balance is awful
i struggle with conversation
There’s other stuff going on too but I can’t think of them lol
why hasnt doctor reffered you to neurologist, they cant read mris and interpret or diagnose it needs to be a neurologist (as far as im aware) i feel sorry for you as yr going to now have to wit to be reffered then a waiting list to see someone, they shouldve reffered you straight away if they thought ms, thats a criticism of them not you
Hi all, I hope you’re all as good as you can be with this horrible condition. I relapsed on 1/1/2015, I was dx in July 2015 with ms. I & the neuro thought I was remitting in July but although a little better I am not back to where I was. I have fatigue & fingers not good, my walking standing is little better though. I think I had another relapse in February which effected my vision in one eye. Can this still be the same relapse from 1/1/2015? I know were not all the same but can a relapse take that long to recover from? I also know that ms can leave a ‘gift’ & that this maybe the best I’m going to get. I just so wish the fatigue would go away. Helly
Kizzy, everything’s backwards here lol. Doc sent me for MRI and said I will then be sent to neurologist afterwards. The doc said a consultant will look at the scan and send a report to my surgery. The only reason I got the MRI was because I kicked off that no one was helping me or listening to me
Hi, it`s great to read that you are feeling better.
Hope that neuro appointment isnt too far away.
pollx
sometimes you gotta kick off to be heard huh its not right, i hope you get to see the right people and get help soon
I know! I had To breakdown before I got the referal for the MRI. It’s ridiculous
Hiya Helly
The short answer to your question is that no one knows.
Sorry, but how long is a relapse and how long is a piece of string are questions with the same answer.
Sometimes a relapse can take forever to get some relief from. And sometimes the scarring left behind leaves permanent damage (what do toes feel like anyway? I can’t remember)!
What drug treatments have you been given? I assume you are now on a DMD? And do you have any other drugs to help with symptoms? Maybe you could try Amantadine for fatigue? It’s not as good as Modafinil but it’s easier to get these days. (Modafinil was available off label for MS fatigue but they’ve stopped neuros from prescribing it in the last few years.
Also, you should be able to access some physiotherapy - that might help with walking, standing, balance, etc.
Hopefully you’ll get to a place where you can feel better soon.
Sue
Hello Mrs Kel
I think it’s been confusing because you are getting things sorted in a funny order, as Kizzy said, normally an MRI is ordered by a neurologist because a GP can’t read an MRI scan, nor diagnose you with MS (or otherwise).
So having had an early MRI basically does you no good because you still need a neurologist to read it and send a report to your GP. Which I suspect still won’t give you a diagnosis of anything, because a neuro isn’t going to diagnose you without seeing you and discussing symptoms / potential relapses. And however well meaning, a GP can’t give you definitive answers.
It seems to me that all the MRI will do is possibly give your GP the ammunition to refer you to a neurologist. Who will then start again with the diagnostic process. By which I mean discuss your experiential symptoms, your past potential MS type flares, get a lumbar puncture done and maybe a VEP (visual evoked potential) test. The neurologist will be in a position to rule things out as well as consider MS alone as a reason for your symptoms.
So, in short, it sounds as though you, and your GP believe there is something neurologically wrong with you. So, what I think we’re all trying to get a handle on is why on earth your GP hasn’t referred you to a neurologist? Never mind sending you for an MRI, what you need is a referral.
Sue
My diagnosis was also achieved by backwards investigations so it can happen.
Last year I had a CT that showed abnormalities so I then had a MRI.This also showed issues so the GP referred me to a Neurologist.
He diagnosed me RRMS but still wanted to do VEP and LP.I had these and they confirmed the original diagnosis.
My symptoms have never been really bad and I was told by the Neuro that I probably have had MS for about 20 years.I can link them back for around 6 or 7 years.
Nothing has really changed in the last year and when I had a visit from my MS Nurse last week she commented on how fit and active I am.
there was someone the other day who went for an mri and her gp got a call 3 days later with diagnosis before even seeing a neurologist, so who knows maybe it depends on which doc you get or whatever but at the same time you want to be 100% sure its the right diagnosis or treatment wil be wrong and pointless and maybe just cause more problems, im going to hospital in morning and literally going to beg them if neccesarry to xray and mri me as im suffering extreme pain and cant take anymore
It has been a nightmare! I just don’t know why they keep messing me around and I am annoyed I haven’t been referred to the nuero yet but at least I will finally have the MRI results soon.
To make matters even worse, I’ve not been able to book a doctors appointment to get the results, instead I have to see a nurse practitioner. My surgery has major issues at mo and can never get appointments. I’m thinking of changing surgery!
Kizzy I went to A&E begging for help and was still fobbed off
I’m beginning to wonder if I spoke to soon or if my painkillers aren’t working anymore though. Last few days I’ve felt stuff in the mornings and I’ve now woken up really stuff like I’ve been punched all over and sore
aw thats a shame i hope you start feeling better soon and dont worry if its the nurse sometimes their actually better and you will still get yr results, im thinking my pain is more heart related as i got woke up with really bad chest arm pain just before 6 this morning thenit hit me again about 9 but the neck stiffness/ pain and shoulders and arm has been constant but im not one for rushing to a hospital or doctor, but this is how my heart attack started 3 years ago maybe its both i dont know i just cant take another attack like this its excrutiating
Sometimes it’s best to get checked though kizzy. Hope you feel better soon
Hi Sue, thanks for your reply. I am only taking Tecfidera & yes have had a few physio appointments that were helpful. I will speak to gp or ms nurse about Amantadine. Compared to others I feel embarrassed complaining but, I just want to be able to do things again & feel well again. Helly x