Last reply 1 month ago
Relapse treatment…

Hi everyone,

How severe does a relapse/new symptom have to be to warrant treatment (ie steroids etc)?? I am coming to the end of a pretty heavy going exam period at uni (lack of sleep, long days, quite stressed), and over the last 2-3 days have noticed a strange sensation in my left arm (and possibly left leg too, although I can’t be sure), but I don’t know if it’s serious enough to warrant ringing my MS nurse and expecting some sort of treatment for it? Or even having time off work, as I’m due back in work end of this week after my uni exams??

It’s definitely not numbness as I can run my finger/pen/pin down my arm and hand and still feel it.
I’ve not lost motor control as I can still lift my arm, grab things, lift things as normal.
I can only describe it as an odd weightless/floaty sensation, that feels a bit clumsy – I’m wondering if it’s related to proprioception? Is that a thing in MS?

Same thing with my leg but not as noticeable – no numbness, loss of control, but feels a bit clumsy trying to manoeuvre my foot into my slipper, which I don’t find with the other leg.

Is it worth ringing my MS nurse, and what can I expect to happen in terms of treatment?

I should add that I’m not yet taking any DMTs – I have an appointment in October to make a decision about that (I’ve not committed fully to a decision yet about which I want).

Would appreciate any reflections/advice, as the only previous noticeable symptom I’ve had was optic neuritis and that was before I was diagnosed, so didn’t really know what I was dealing with!

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stumbler
2 months ago

@srh90 , you’re right, the stress of your exams could well be the reason that you’re feeling these symptoms.

There are some definitions and information about relapses here :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

Personally, I’d get in touch with the MS Nurse. Discuss the situation with them.

As a rule of thumb, your MS Nurse should be your first point of contact for anything that you feel is related to your MS. Especially so as you are not that experienced with your MS body.


nutshell88
2 months ago

When I was at uni 7 years ago i had a symptom wasnt able to get a grib of anything not even a pen
My tutur took my case in consideration
I’d say get treatment but of course after your MS nurse approval


srh90
1 month ago

Thanks @stumbler and @nutshell88! I did get in touch with them in the end – bit disappointed that it tool a while to get through to anyone as no answer on their number and then told not much point in any acute treatment like steroids or anything…kinda makes me wonder what is the point in contacting them in the event of any changes :/


stumbler
1 month ago

@srh90 , MS Nurses have a busy workload. There’s lots of us and not many of them. It is usual to have to leave a message and wait for a callback.

Timing, and severity of symptoms, is key. Steroids are only used when the severity of the relapse affects quality of life, e.g. visual or mobility issues. Recovery from a relapse is exactly the same whether Steroids are used or not. It’s just with Steroids, that recovery can be achieved quicker.

MS Nurses “have the ear” of the Neurologist and more MS knowledge than a GP, so are a good point of liaison. We have to work with them, so we do have to assume some responsibility for our own wellbeing.


cameron
1 month ago

There’s also the chance that your symptoms are ‘reactive’, i.e. could disappear when you’ve caught up on sleep etc. I think it would be a good idea to start a symptom diary to self-monitor over the next few weeks. I found this the best way to a) avoid relying on my memory to answer neuros’/nurses’/GPs’ questions about my symptoms and b) avoid my constant obsessing with what was going on in my body – write it down, put it out of my mind and c) improve my self-awareness by narrowing down and categorising problems (instead of feeling my entire body was affected). I started by listing my symptoms, then numbering them e.g. a)-stiff knee, b)-dropped foot, c)-pins and needles in toe, d)-pins and needles in arm. Then at the same time every day I gave each letter a grade 0 – 3, with nought meaning I hadn’t noticed it that day and 1,2,3 describing its severity. If you record it on a big-format calendar you can spot patterns week on week, which is really helpful and may surprise you. I know I saw how certain symptoms diminished or went away over the days. Some of these symptoms are quite subtle so it’s helpful to note even small variations. It’s so easy to be overwhelmed by the worry and stress of it all, but I found this did help. xx


grandma
1 month ago

I went to hospital by ambulance on Fri/Sat cos I was relapsing. I have had my ms for 26 years, know my relapses well. Usually lose my sight within 24 Hrs unless I get intravenous steroids quickly. After 7 hrs wait in A&E saw a student, he couldn’t even take blood, after I fainted and bled all over the floor of the cubicle a male nurse took some and put in a catheter very quickly in my other arm which wasn’t shaking continuously because of the ms relapse! 5 hrs later I discharged myself as they refused me intravenous steroids because the student doctor didn’t believe I was relapsing properly. They wanted to keep me in A&E for 24 hrs to observe me. Having argued with manager of A&E, and as I had oral methyprednisolone at home, I discharged myself, caught a taxi and came home Sat morning and started reducing dose in the hope of saving my sight. My hospital does not care, they will not listen, after all a member of the public cannot possibly know more about a disease than they do,can they. I hope you have a GP you can talk to, I don’t. I called the ms norses on Wed, was promised a return call, it didn’t happen, waited all day Thursday, slowly getting worse, ended up calling ambulance on Fri /Sat and got treated like dirt as usual. If your face doesn’t fit, as mine doesn’t, then you are even more on your own. So I do hope you have a better NHS hospital and support network than me.


nutshell88
1 month ago

I guess it depends on how and where it attacked
For example double vision as on my case it has effected me 8 times i had treatment twice
But optic neuritis needs steroids

Also how long it lasted
If double vision or a limb lasted over 3 weeks without getting better it needs treatments with steroids


gijs
1 month ago

@srh90 I’ve had steroids once (5 days of solu medrol) so don’t have a big experience, but – rule of the thumb is – if the symptom is bothering you and stopping you from your routine (work/socializing etc) – go for steroids.

Symptoms tend to improve without them, but it can take much, much longer (up to a year, if you don’t relapse). With steroid treatment you shorten this time considerably.

Hope it helps a little.

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