Hallo - can someone with more knowledge than I possess help? I am not sure if I am having a relapse or if the middle ear infection that I have been diagnosed with is causing me to feel like I am relapsing.
Symptoms are - being off balace (staggering like I am drunk (how I wish)) and a tightening up of my first presenting symptoms in my left leg causing me to be unable to walk with a ‘normal gait’ but the leg isn’t numb like it was in my first attack, nor has it spread nor is it trailing nor is it actually tight but it just won’t behave and I can’t walk ‘normally’.
Hoping its just because of the ear infection which can throw off balance and that the infection is just causing a flare up… (yes being optomistic). I guess only time will tell - but will it?? What is the difference between a flare up and a relapse?
Also - just to add that both the ear infection and leg has commenced during an outbreak of chicken pox (had it as a child) at work and my first symtoms last year happened during another break - coincidence? Link between MS and varicella-zoster anyone?
I am not fully MS diagnosed yet…Neuro is calling it Transverse Myelitis as I have ‘only had one clinically isolated episode’ to date (13 months) but lots of other symptoms over the last year (huge bouts of head fog, huge heat intolerance, lightheadedness, numb leg, depression, weakness in right leg/arm etc) a lot of which I put down to poor vitamin D (my levels were 10) and Vit B12 (levels were 200) both took 8 months to get addressed by my doctor despite Neuro writing to them but am on D supplements and having B12 shots and was actually feeling amazing then 2 days later…bam! Ear infection.
So - not sure if the above is my 2nd episode therefore I am a confirmed MS’er (but does the 2nd episode need to be in a different place - space & time and all that) or is the above the 2nd episode or a flare-up?? What if the difference? Also, what is the difference between progressive MS & RMMS as just before my b12 shots I felt that I was just continually getting less able with the weakness in my right leg just tight trying to flex (dorisflexon/tight achillies) and slight weakness in right hand making writing tough sometimes - the hand passes but right leg stays???
Sorry - hoping someone can help as I can’t see neuro till Nov. Thanks in advance.
Hi rosey Sorry to hear you are not well. I cannot answer all you questions but certainly infections can aggravate things. I too have an infection at the moment, mine is sinus/ears/chest and this has started a weakness in my leg (from a relapse many years ago). It seems to happen when I get an infection and then resolves. Like you I had low b12 and vit d. Not taken seriously by my gp, (not low enough), so I take supplements myself and now doing better and bloods are good. Hopefully others will be able to help further. Rest if you can and drink plenty of water to help rid the infection Helen X
Thanks Helen. Much appreciated. Think it is most likely due to the infection these pesky symptoms! Haven’t been drinking water but will now. Hope your infection(s) clear up soon. Xx
Not sure where my response went?! Apologies if this repeats. Thanks Helen - much appreciated. Fingers crossed its due to the ear infection. You feel better soon & hope your infection(s) clear up soon Will drink more water! xx
Hi Rosey Not an expert and been struggling with this myself this last couple of weeks - what’s a relapse, what’s symptoms, what a flare and what might me drug side effects?! Very complicated condition this as I’m just starting to get to grips with. Any way, in case it helps here’s what’s happened to me today. Went to see doc at neuro day case unit for an assessment as been having odd symptoms. I though they might be side effects of new medications but ms nurse said could be a relapse. So. Had neuro exam and described what had been happening. Was told could be caused by infection (symptoms similar to yours actually) so took temperature and did urine test. Ruled out infection and prescribed steroids. So I’m guessing they won’t consider anything else till your infection has cleared up - are you having treatment for that? If so, if it’s ‘flare’ symptoms they should go when the infection does. If they don’t then straight back to your GP. If you’re lucky you might get to see neuro sooner I don’t know about the PPMS vs RRMS question. I’m RRMS and thought that meant I’d be fine 99% of the time with the odd blip. It is like that for some but often the symptoms from a relapse won’t fully resolve, which doesn’t necessarily signify progression. Hope that was vaguely useful and that your ear infection clears up soon - that’s got to be nasty without the added extras on top! Take care x
Sunflower - thank you so much. Absolute sense you make (ooh I came over all Yoda there). Makes sense - if the symptoms go when the infection does then its a flare. Im having treatment for the ear infection in the form of an antibiotic spray into the ear - it’s a slow recovery but think I’m getting there but the pesky leg is still stiff and walking all over the place. A few things in your post have intrigued me… neuro day case unit - what is this??? Do these units exist up & down the country and are that literally that i.e. a drop in when you need help/assessments? Do you need a GP referral? Secondly the MS nurse. I don’t have one and I just can’t seem to convince the neuro or GP to assign me to one. I have to guess its because I’ve only had the one episode but all these continuous symptoms see me in and out of the surgery almost monthly and I know I’m fast becoming the heart sink patient (the audible sigh and eye rolling are the tells) The rrms ppms issue troubles me - I hear you re relapse symptoms not fully resolving but am scared by my walking decline over the last few months (long stretches of walking which up until April I could do without leg tightening). But, I know this is a complicated disease and it takes different forms in different ppl but am sure that once then infection goes, a lot of questions will be answered (and new ones will spring up) I’m sorry you’re having a tough time too - hope the steroids help and you feel better soon. Thank you again for your post. Seeing GP thurs and pushing for a neuro call in addition to nov consult. Will update end off the week. Thanks again and feel better soon x
i saw my ms nurse convinced that i was having a relapse.
she did a quick urine test which showed that i had an infection and therefore it was a “pseudo relapse”
rrms often becomes spms but not always.
ppms doesnt have relapses or remissions.
to be honest everyone is different.
i was under the impression that ppms was the worse kind but then i met someone who has it and she’s doing well.
Hi Carole - thanks for that.
Now taht a few days have passed, the leg is improving and the ear infection getting better.
I am hopeful that this will go completely when the ear infection does (scared there will be a little residual issues) but still confused as to whether it does go or if it’s a psuedo relapse - does that make it a 2nd episode and therefore MS?? Can an isolated episode relapse?? Or does the relapse confirm a 2nd episode or does that have to be somewhere else?? Can TM relapse/flair up??
SO many questions but with each answer I am more hopeful and most cerainly getting better informed!
Thank you xx
You are asking some very good questions that I haven’t got to the bottom of yet, and I have had MS for quite a while. You are very good at identifying some of the more slippery areas, and if you do get proper answers to your questions on here, I will be very interested to read them!
A couple of observations I will venture - an infection always has to be a prime suspect when relapse-type symptoms accompany it. Most of us find that if we have a nasty infection like a UTI or an ear infection, MS-type stuff flares up. Where the line between that sort of infection-driven pseudo-relapse and a real relapse falls, I have never been quite sure, and experience of both has not helped much. It has always seemed to me that an infection/fever cannot stir up something neurological that wasn’t there waiting to be stirred, but I am only speculating and do not properly undertand the distinction there, or indeed how one would categorize the kind of relapse that can follow on from something serious like flu (the sort of thing many of us with MS try to avoid by getting the flu jab).
Your other questions I cannot tackle at all, except to say that if MS-type attacks show an improvement over time, that probably gives good info about what type it might be if it did turn out to be MS.
But what you need is a good chat with an expert, obviously. You will certainly have your questions at the ready when you see the neurologist, and I hope that you have a productive consultation and come away with a better understanding of the kind of distinctions that are currently a puzzle to you as they are to me!
Good luck with it all.