so over a week ago I woke up to what felt like horrendous toothache. Went to my dentist who couldn’t find a cause but gave me a week of antibiotics to be safe. A few days later, the pain got worse (never known pain like it!) and it spread up my face and behind my eye. Couldn’t get in to see the GP so went to the opticians who suspected ON and sent me off to eye casualty. Was examined and told i had atypical ON and to speak to my ms team and come back in a week. Spoke to my nurse and neuro who diagnosed Trigeminal Neuralgia, been px Carbamazepine, it has dulled the pain a little, still early days though.
Spoke to my nurse again today who said i need to be reviewed by neuro in clinic. But as i had brain MRI done at the beginning of April and it showed no new lesions she thinks this isn’t a relapse. So my question is how can she be so sure? And if it’s not a relapse what is it? Progression of symptoms? Or am i going mad and suffering some psychological problems!?
Well it sounds like a relapse to me. (In my non-medical opinion!)
I don’t think there’s any reason why you can’t have an MRI in April, have no new lesions, then have a relapse in May. What we perhaps don’t know (is it possible to know?) is how long a lesion takes to form. Whether a lesion can form within a couple of days, causing TN? Or not?? Or whether in fact the TN is appearing in spite of the being no new relapse?
is it possible for you to ask this question of your MS nurse? Or does anyone else know? Or will your nurse perhaps refer you for an urgent appointment with the Neuro?
It’s actually a pretty important question, one that sort of comes up on this forum all the time, only perhaps not so clearly asked.
Having just last month had an MRI makes it very clear that if it’s possible to have a new lesion now, then what you are experiencing is in fact a relapse.
They are other reasons TN might happen so it might not be a relapse, that might be another reason some people might think a MRI is pointless While it is very common with people who have MS, everything else might have to be ruled out depending on the Drs opinions. Some, because it is a known problem with MS don’t think it is a big deal, just prescribe meds and leave it at that. I use to suffer horribly from it, but the nerve was damaged from jaw surgery on both sides so while i can’t move my face 100% I don’t get horrible pain anymore.
That’s a good point, I’m seeing him on Wednesday coming so will ask that very question! I get the feeling my nursing team don’t think it’s possible to relapse on Tysabri (on infusion no 16), but having felt ghe pain of TN I’m not as sure. Thank you x
i had 2 teeth removed because of the pain, dentist could find no cause either. i know this is rare and not recommended however my dentist was fab (have moved house since) and i hope that my new dentist listens to me as well as his textbook! the teeth were removed 7 yrs ago and have never had that pain again.
I have no doubt that it’s possible to relapse on Ty, but my nurse is not as convinced and i guess according to my mri that’s true, but, something definitely going on! I was seen by ENT dr recently too who ruled out my sinuses or ears causing the problem. I’m at such a loss!
Tysabri is supposed to reduce relapses by approximately 68% and reduce the severity of relapses by about the same percentage. Also disability progression is reduced by about 42%. Isn’t that in the sales blurb? That’s what’s on this website anyway. Therefore it is possible to relapse on Tysabri. The hope of everyone is of course that this is an average and what it means is that some people have no relapses at all on Tysabri whereas it just doesn’t work for some others.
At least you’ve managed to get in to see your neuro pretty fast. Please let us know what he/she says about
a) relapsing on Tysabri, and
b) speed of relapses (ie following an MRI last month could it be a relapse?)
My nurse said it’s unlikely that anyone with an MRI like mine would relapse on tysabri, but in the same breath said mri can’t pick up every lesion especially in grey matter! Like talking to a brick wall.
Agreed that getting the pain under control is the most important thing here, but I believe it is of some importance to know if it’s a relapse in terms of treatment escalation.
To ssdd,
its what your nurse did not say that matters.
If you were scanned by a lower powered scanner (say the typical NHS 1.5T ones) then you could well have new lesions that were not picked up.
As I understand it, only a 3T scanner can be considered as definitive.
Do you mean that an MRI can be a good MRI machine or a bad one??
Flippin eck Dr G. This turns everything I thought I sort of knew about MRIs on its head. So now we have to establish whether the actual scanner is 1.5T or 3T? (Whatever that means!)
Is there anything else maybe in between the two or is that it?
Thanks for that Geoff, yes was a standard 1.5 with flair ( whatever that may be)! I know my neuro is not so reliant on mri, only had one as am on tysabri. Will see what he thinks Wednesday.
thought id let you know what what the neuro said yesterday. So yes it is possible to relapse on Tysabri (not a usual occurrence in the majority of tysabrians) but can and clearly does happen.
Regarding the timings, he said there is no definition of how quickly an ms attack can occur but in ms anything is possible! So he believes its a new relapse that unfortunately happened after the MRI. Said there’s little point doing more imaging as we know what the problem is.
So on carbamazepine and it’s working well, might have to start Lemtrada but will see how the next 6 months go.
Have I got this right: the MS nurse’s logic is that a relapse that wasn’t happening in April cannot possibly be happening in May? Ye gods! Isn’t it too bad your TN cannot be denied existence by the same logic.
Maybe you had better tell your MS that, if it doesn’t want to be ignored in future, it needs to fall in with the MS nurse’s diary before daring to raise its ugly head again.
While it is very common with people who have MS, everything else might have to be ruled out depending on the Drs opinions. Some, because it is a known problem with MS don’t think it is a big deal, just prescribe meds and leave it at that. I use to suffer horribly from it, but the nerve was damaged from jaw surgery on both sides so while i can’t move my face 100% I don’t get horrible pain anymore.