seanachai 08/04/18
Last reply 1 week ago
my turn…. RELAPSES..

This feels like another recurring question but I have to ask, as its driving me mad…

I had last known/confirmed relapse back in October 2017…. its was sensory, on more or less the left side of body, started in foot (numbness – sort of sensation) working its way partially up the body, heat etc, very classic symptoms… almost 95% of it went away, very minor sensory stuff left in soles of feet… and I mean minor… but its there…

So last couple of weeks I have what we would all typically refer to as pseudo exacerbation, so symptoms from first relapse on right side seemed to be back a little… right hand…sensory..minor…. you become aware of the old symtom, although no where near as magnified as the first time….

The left side from the Oct 2017 relapse seemed to be playing up… milder this time, feet etc…exact same ares, soles of feet, lower back heat etc.

So I am left with the classic Q, is this a relapse?…. should I push for steroids, all the usual turmoil…

From a personal perspective, I would rather avoid the steroids, only because I think if is pseudo, I could make matters worse; steroids as you know sort of “switch off” immune system… if prefer to let “sleeping dogs lie”….maybe I might trigger something proper….. the alternative argument; what if its a real relapse and more collateral damage this time…

My logical brain says; because its in the exact same areas, it must be pseudo….. but the contradiction is… because its been on off for two weeks now, seems like a long time for a pseudo given I know the sort of definition and timing for relapse floating around on the brain that is google…

What to do !

All theories welcome….

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annie13
2 weeks ago

Hi @seanachia,
I understand where you’re coming from. I too find it very difficult to tell a relapse from everyday symptoms. My first relapse was Nov 16 and I think I had another one in Nov 17 but I’m not sure. I had some similar symptoms to the first but not as strong. It didn’t impact my daily life and I just went about things as normal. I suppose it’s still early days for us with this disease and as time goes on we’ll hopefully be able to tell what’s happening in relation to relapse/pseudo symptoms. Maybe give your MS nurse a call just to get a professional opinion? Sorry I couldn’t be more help!


annie13
2 weeks ago

Woops! I meant @seanachai


vixen
2 weeks ago

Hello @seanachai, sorry you’re going through this. I have similar sorts of issues at the moment. Yes, I too have wondered about official definition of a pseudo. I wish there were a quick and easy way of diagosiing a relapse from a pseudo or everyday symptoms. What happened to get your Oct 17 relapse declared as such, did you get an MRI? I read on here recently that over time, these differences become easier to understand, so can’t wait for that to click in with me. Deffo give your MS nurse a call to tomorrow though, as it’ll go down in your notes which is a good thing at least. Hope you feel OK soon, let us know if you manage to unearth any insights into what these difference between relapse, pseudo and ongoing symptoms are! X


stumbler
2 weeks ago

@seanachai , as far as Steroids are concerned, it’s all a question of severity of symptoms.

If the symptoms are life-impacting, either visually or mobility-wise, then Steroids are a useful “tool” to bring this activity to a “swifter” conclusion. Otherwise, it could be preferable to rest up and let things resolve naturally.

Steroids or not, the outcome will still be the same.


seanachai
2 weeks ago

Thanks for all the advice, I have my first appointment with the “MS team” in a couple of weeks, which no doubt includes the MS nurse…. maybe as you say, I just need to ride out it until then, relax and let it resolve….

@stumbler – I was under the impression that the steroids by bringing the activity to a conclusion and temporarily suspending the immune system, that it can in some instances lesson the damage… I know they don’t always work either…


stumbler
2 weeks ago

@seanachai , as far as I’m aware, Steroids do not alter the outcome of a relapse. They just bring the arrival of this outcome forward. 😉


grandma
2 weeks ago

I will give you my basic info, have had ms for 25 years, have had steroids about 10 times, hospital don’t like giving steroids more than twice a year. My relapses follow the same pattern each time, I know more about them than the ms team does (I am 62) and finally they have started to listen to me. The steroids start to work within hours and the usual 3 day intravenous course works wonders for me. I keep some methprednisolone in, in tablet firm, that I take on holiday so if the worst happens when I’m not near my local team I can start straight away, but the tablets don’t work as well despite what the hospital says! Have had no side effects that I know of, I know I have been lucky and I know that, but they have been using them for years, but listen to your ms team when you see them, but go with a list of questions , you won’t remember without the famous list! Good luck and keep smiling😍


seanachai
1 week ago

Thanks Grandma.

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