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How do I know when I am relapsing?

Hi I’ve just been diagnosed with MS. My brain/spine scan showed 10-15 lesions. It was only after a fall, I bruised my r-buttock, then a couple of weeks later my r-leg dragged/ankle drop, and after various tests I was diagnosed. This news hasn’t really phased me - family and friends are more concerned at the condition than I am. Maybe because my younger brother has lupus and I’m now taking on my own advice that I’d given him for years (13 yrs between us). I’m not on medication at the moment as I’m waiting to be transferred to neurologist’s NHS practice. I was on steroids for a week. I’m a little confused because I don’t know when I was relapsing or what my relapsing symptoms are. I do not suffer from fatigue. I’m 46 and I feel ok. I go to gym(-ish), I snowboard (usually on my bum - ok balance not that great), and eat fairly healthy. All I can say is I’ve been clumsy at times dropping and bumping into things (only around time of the month), I do get nauseous sometimes riding on DLR, and although a person of colour I burn easily in the sun - but these aren’t relapses?? Are they? I’m trying to think of any unusual symptoms I may of had. I used to get a heavy leg whilst running on treadmill and put this down to over exercising. I think this was an MS symptom because leg would drag, but only for a few minutes. Neurologist said relapses may have been ‘silent’. But I have read other posts on forum that some are saying they had only two lesions and had severe symptoms. How can I have had 10-15 and it go unnoticed until now?

I am absolutely no kind of expert on the technicalities. For what it’s worth, my understanding is that the key thing about lesions is where they are. I remember the neurologist saying to me years ago that the positive correlation between lesion load and actual disability was surprisingly weak. A person can have lesions in places where they cause no trouble, or where there is enough slack in the system for the brain to do some slick workarounds, so that the person whose brain it is hardly knows that there is a problem. Or, as you say, a person can get unlucky and have one or two lesions in places that cause mayhem.

It must be a bit of a shock to the system, being told you have MS when you were not expecting it, and also having to deal with the likelihood that you have had it a while. That’s a heck of the thing to come to terms with. At least your MS has not made too much of a nuisance of itself until very recently - that has to be a good sign. I hope that it stays that way.

Alison

Hi, I have multiple lesions on my spine/brain and I’ve been asked numerous times by my ms specialist if I have any issues in some of the areas that the lesions should affect and I don’t thankfully so I do believe you can have multiple lesion and they can go unnoticed. I have had one relapse and the specialist last week suspects I am relapsing just now so have been put on Oral steroids . I was clueless with my first relapse as didn’t know if what I was experiencing was a relapse but it was as I had new symptoms and other areas with numbness, shocking sensations in places were I had no problems before and my older symptoms worsened. What I do now is write any aches, weird sensations or symptoms I get and when they happened so when I meet with my specialist I know (remember) how I have been this has really helped me. Take care Polly x

Hi pp,
Like Alison said, it’s not what (lesions) you have, it’s where you have them that causes the effects.

My first Neurologist put it like this:
When you get any unusual symptoms, make a note of them. If they last for more than a week, phone us!

My second Neurologist said:
Make a list of your problems - worst first - and then shorten the list (like pins-and-needles in a foot, and numbness in the same foot is one item not two).

My advice is to write the list by hand, shorten it by hand, then write it out again before you even think about doing it witha word processor. That way you are much more likely to remember it when it gets to an interview. If you do have a hard copy of your revised list - don’t hand it over at the start of a session with Neurologist. You want his attention on you, not a piece of paper. Just have a copy with you.

Finally, remember that we are all different and so are our symptoms.

Geoff

Completely agree with Geoff,

Use your appointment time to interact with the neuro, not just to hand over a list. The list should be an aide-memoire for you, in your discussion - not something just to be handed over and stuffed in your file - probably never to be looked at again.

If a list did the job by itself, you might just as well e-mail it, and save yourself the bother of an appointment at all. But time with the neuro is hard to come by, as most of us have found, so use it wisely, to have a proper discussion, and not just hand over a list. Don’t forget that what’s written down could seem perfectly clear to you, but might mean something completely different to the person reading it, so use it as the framework to explain - not something he’s supposed to understand without any further input from you.

To the original poster, Pickledpig: I know 10-15 lesions might sound absolutely horrendous (actually, finding ONE is horrendous, if you’d no idea you had it!) But when I was first investigated for MS, at 44, I was found to have six brain lesions, and another 1-2 in my spine. I was told that “at your age”, literally dozens were not unusual - in people with MS, that is - not as a natural sign of ageing. By the time I got a confirmed diagnosis, several months later, I apparently had “a few more” - though I was never told exactly how many, and I never asked, because I probably wouldn’t have liked the answer!

So I’m guessing that if I had 7 or 8 to begin with, and had acquired “a few more” by the time of diagnosis, we’re probably talking a similar range to yourself. You do need to look at it in the context of dozens not being unusual in MS patients our age. A number by itself means nothing, unless you know how many others have.

Three years later, and although I wouldn’t call myself exactly “fit and well”, I’m still moving around freely without a stick, and walking quite long distances - up to about four miles (I actually walk further now than I ever did when I was well, out of a desire to preserve what I have).

So please don’t get eaten up by the numbers game. As others have said, it’s actually a very poor predictor of disability anyway. Many lesions either have little effect, OR the brain is successful at reallocating duties to minimise the impact.

Slight aside, but I did pick up on the sunburn thing.

I wonder if this really was sunburn, or might, as you seem to half-suspect, have been to do with the MS? I’ve had neurological pain from MS that felt almost identical to sunburn. In my case, I knew it couldn’t be, because not only am I fair-skinned, and there was absolutely no visible evidence of burning or damage of any kind, but it was England, in February, and I’d not been abroad or using tanning beds, so chances of sunburn were near zero. This was before diagnosis. As there is a family history of thrombosis, I got scared, and went to the doctor, fearing a blood clot (unexplained pain in a leg). Doctor got a bit short with me for time-wasting, and sent me home with a ticking-off.

Ages later, when I was diagnosed, she was visibly upset, realising her mistake, and said: “Oh of course! You had that thing with your leg, didn’t you?” We both now realise “that sunburn thing” must have been a (mild) MS relapse.

Tina

x

Wow, thank you all for your posts! They have been very helpful - I’ve bookmarked page for future reference. I was lucky to be diagnosed fairly quickly, having the scan and eye tests under BUPA. As a private patient I only had 15 mins with Dr, which flew by leaving me with many unanswered questions. I am transferring to the same neurologist’s NHS practice - he said he would be happy to “take me under his wing”. He is also doing a trial on a new drug, and he wears quirky ties, which swayed me :slight_smile: So, what I’m taking from the posts above is that the various lesions on my brain/spine have luckily not hit any major nerves to cause a severe reaction? Just the one that caused me to have a weak leg causing me to fall (backwards and bruise my bum), which caused my leg to act up. So Tina, are you on medication? Because you say you are “still moving around freely without a stick”. I do actually get visible heat rash, which can be sore then later peel badly, when I’m in high UVA, ie not necessarily sun but also a bright day. I’ve discovered if I use sunscreen with high 5* UVA protection it helps. Well, I’m still not sure what my MS “triggers” are - but I am thinking maybe migraines, gym fatigue, heat fatigue? I do recall in the past that I have tripped in flat shoes and been fairly clumsy at times, and I’ve twisted r-ankle frequently (but could still walk on it - used to say I had “bouncy ankles” :slight_smile: Sometimes wearing higher heals my r-ankle would turn inwards - I thought I’d pulled a muscle. Maybe gym fatigue? - whilst running on treadmill my leg would get heavy and drag (can’t remember if right or left leg). This would only last a few minutes after I got off treadmill and I thought I was just tired. Also, migraines. I had more lesions on r-side and my migraines are on right side of head. Usually brought on by stress but sometimes I didn’t know why I was getting an attack - and I’d be chronically tired even after taking a tablet. I would have a nice, deep sleep. I think stress is a factor. I will take your advice and make a note when “funny things” happen. I have also taken up yoga again as found it relaxes the mind and helps keep my stress levels down. Actually as I type years ago I did a Bikram yoga class (it is a v.hot class) and I didn’t cope well in the heat - I’d strike a pose and topple over! Much appreciated x