I know it’s any symptom that lasts over 24 hours but is it a new symptom that has never been experienced before or can it be an exacerbation of existing ones?
I have had a few new symptoms, like hot feeling in my leg which has lasted a few days, but nothing that I would class as troublesome or what I think needs reporting as such. I tend to just write these down so I don’t forget when it comes to my yearly review with the neuro.
But since my last relapse which was clinically disabling, numbness down one side and MS hug, I have been left with residual symptoms from this (which I assume now are a permanent fixture in my life) but have got a lot better. I have tightness in one side of my ribs and a tighter feeling in my left leg but the numbness has resolved.
Recently I have had an worsening of the same symptoms, so tightness is worse and leg feeling stiffer. I have done some exercise recently but does this need reporting as new episode or is it old stuff coming out to haunt me?
I never know what I need to report. My last MRI indicated I was having more relapses than I thought (or reported) but I didn’t think of reporting numb bits here and there as they haven’t stopped me carrying on in a normal way or being able to work through them.
Any clarifiaction would be welcomed. My last MS nurse appointment was cancelled never to be rescheduled it would appear and I’m not due to see the doctor until August.
I wish I could help, I totally understand. Its the mild relapses that are the hardest to know if its a relapse. I think I’ve had one bacuse I’ve been experienceing new symptoms, but when I’ve mentioned it they didn’t seem to concerned.
Can you not send your nurse an email or give her ring to talk about it before august?
My first question would be ‘why do you want to know whether it’s a relapse?’
Worsening of existing symptoms that had got somewhat better definately counts as a relapse. If you want to call it a relapse because you want to get steroids or become eligible for a drug that will make a difference to the progression of your disease, then note it down as a relapse. You can go to your GP to try and get to see an MS nurse or try tp have your appointment with a neurologist moved forward (good luck on that one).
If you want to know if it’s a relapse because that will tell you whether these symptoms will go away again - no-one can tell you that. They may go away on the same timescale as before, or quicker, or you may be stuck with them for a long time or forever. Unfortunately, symptoms that come with a relapse may still be with you when the relapse finishes.
I’d like to know when I have a relapse to help me understand the difference I got DX last year
Hi nette and Minnie_mouse,
As well as asking for advice on this site you must also make a nuisance of yourself with your GP, MS nurse or Neurologist. Don’t try to guess anything let them help you, also when you contact them a record of your query should be recorded which may be invaluable in the future.
All the best to you,
I did mention a couple of odd things that I was concerned about but she never said if it was a relapse or not
There’s just no really solid definition of a relapse - one of the annoying and mysterious things about this disease. If you look on one of the websites that provides information about the disease (including this one) you’ll find that any worsening of symptoms can be classed as a relapse. The worsening can last for a few days or a few weeks or months. When the symptoms get better, they might only improve slightly or go away altogether. The symptoms you get may be ones you have had before or totally new. Like I said, if you want to call a worsening of your symptoms a relapse, you have every right to. There are some benefits to this - in particular, eligibility for drugs. One things you can know for certain, there’s no great all-knowing medical person out there who can tell you you’re having a relapse. If you start feeling a lot better in a while then you’ll know you were having one. Also, if you have steroids and a week later you feel a lot better, you’ll know you were. If you have steroids and don’t feel better afterwards, you can’t be sure you weren’t having a relapse, it may be that they just didn’t give you a high enough dose of the steroids.
Thank you sewingchick
I think for me, ive had two more symptom’s since the start of this year and I was told that I haven’t had a relapse
The people who told you that haven’t checked the definition of a relapse. Here it is (from this website)
What is a relapse?
A relapse is defined by "the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or ". Symptoms you have experienced before, or perhaps grown used to dealing with, might appear in a different part of the body.
In relapses, symptoms usually come on over a short period of time – over hours or days. They often stay for a number of weeks, usually four to six, though this can vary from very short periods of only a few days to many months.
Relapses can vary from mild to severe. At their worst, acute relapses may need hospital treatment, but many relapses are managed at home, with the support of the GP, MS specialist nurse, and other care professionals.
Symptoms which come and go can sometimes be considered a relapse – they don’t always have to be continuous. For example, some people experience a shock-like sensation when they bend their neck. This can be considered a relapse if it occurs every time they bend their neck for at least 24 hours.
The important part of this definition is the last few words of the second paragraph. Like I said, you may have been told that you’re not having a relapse but the people who told you this can’t know until “many months” have passed.
This is also relevant to the question of ‘what is a relapse?’. It also comes from this website.
Will I recover completely from a relapse?
People often make a very good recovery from a relapse, with complete . However, this is not always the case and around half of all relapses may leave some lingering problems, however slight.
This is because, if the damage to is severe, then some symptoms remain, though they may still improve over the following months.
This has been an interesting thread…for a novice like me. I am definitely primary progressive, although I’ve been told I could have a relapse.
For Blossom - how do you know you’re definitely primary progressive?
The neuro specialist at the ms centre told me last year after reviewing ally tests. He said I’d probably had my brain lesions for at least twenty year. X
Thank you, that’s quite interesting Makes me think I may of had one. Since the year I’ve had problems with my bladder and I’ve suddenly gain an of warm patch on my ankle/leg
I have real issues with my bladder - I had several months of wearing thick pads and still struggling to get my knickers down before I started weeing. My neuro suggested botox injections - by the time I saw the botox guy, I was doing fine on bladder control and told him I didn’t want the injections. A few weeks after I saw him, I started having lots of problems again. They’ve gone on for a couple of months this time, I saw my GP to refer me to another botox doctor in my local hospital.
Guess what happened three days after I saw my GP? Yes, my bladder control started to improve - I’m now wearing those teeny weeny pads and doing fine. So I guess these were both relapses, even though the first one lasted months. But I’ve got better from them, so I think I still have RRMS. My neuro seems to have his doubts about this and it is true that my walking just keeps getting worse and I never have remission from my problems with my leg muscles. Like I said, much earlier in this thread, MS is mysterious.