Steroids not working / realpse / confused!

Everyday living
1

Hi all

I was very recently diagnosed with MS, although I don’t know the type as yet (I guess it’s too early to tell?).

Anyway, I had a 3 day IV of steroids last week, 1gram a day. Yes, mega-dose! I felt no different whilst I was having the IV, had a bit of insomnia during and after, and also had a very tender face, head, neck, shoulders and chest for a day or so after. Nothiing too bad. However, it’s almost a week since the treatment was finished, and my symptoms havent’ improved. In fact, I seem to be piling on the symptoms, rather than removing them!

I started with fatigue, vision problems, pins and needles in arms and legs, pain, urinary issues and a balance problem, which impacted my walking. Since the steroids, I also have a problem with my voice (no, I don’t have a cold or sore throat!), pins and needles on most of my body, the MS hug and today, the thiing that panicked me most of all, violently shaking legs. I was sitting on my bed and it started out of nowhere. Whilst it has faded now, I can still feel a strange buzz (I guess it’s muscles twitching up and down my legs?), and my legs feel very weak, and every now and again, they do a twitch.

I’m not a pancky person, and I don’t believe for one moment that the steroids are to blame, but I am a bit shaken by all of this extra activity.

Has anyone else experiences this worsening of symptoms after steroids? And, is this set of new symptoms a new relapse do you think, or is it all part of the same thing? My first symptoms of fatigue and vision problems have continued right through, everyhing else has just piled up since June.

So sorry for the long post - just wanted some input from those who know… and of course I understand that everyone is different…

Thanks all -

MonkeyGirl

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Hello Monkey Girl,I get it that you are confused and looking for answers.All I can say to reassure you is that 'roids do affect us all differently and they do take a lot of metabolizing by your body.Hopefully you’ll look back in a few weeks and with ‘handy hindsight’ realize that the 'roids did you good.

I found that the first dose was the best.I be;lieve that in Scotland 5g over five days is not unusual.A few years ago a neurotic put 3g into me in 15 hours.I left the hospital leap frogging and I was in superb nick for six weeks

Just give it time and enjoy hoovering at 03:00. Good luck,

Wb

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Thank you so much, wobly boy. My Neuro said I shoud start to feel the benefits early this week, but that hasn’t happened so far. Yes, I do get it that we all respond differently to medication, but in practice my patience isn’t as evident as I would like it to be!

l’m such a novice at all this - I’m looking forward to putting on the hindsight spectacles in a few weeks, fingers crossed. I hope so, because I’m finding all of this rather overwhelming. I’m a bit of a control freak - and control is really lacking at the moment.

Thanks again -

MonkeyGirl

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it must be one of life’s most brutal rollercoasters…

  • the fear of symptoms
  • the sadness of diagnosis
  • the hope of treatment
  • the disappointment of no effect

you have no choice but to be patient. i guess that is why in the medical profession, we are all ‘patients’.

‘hurry up and wait’ should be a universal health care slogan!

and indeed at the same time, even the most experienced doctor works out of a ‘practice’.

i apologise, no words of comfort are coming from me i know. but take heart in knowing that by consulting these medical professionals and by taking their advice and getting treated, you are doing all that you reasonably can, to ensure that you are on the path of greatest recovery.

just keep that symptom (and improvement) diary up to date!

2 Likes
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Thank you, Paolo. ‘Hurry up and wait’ was in my mind yesterday, definitely! Yes, I guess you’re right - I am and have been doing all that I can to deal with this, even working from home (thank goodness) rather than dragging my carcass into work. I do feel a little less freaked out this morning - at least the new symptoms of yesterday won’t be new today. Yes, symptoms diary is indeed up to date. I’d forget everything otherwise!!

thanks again -

MonkeyGirl

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hiya

i get the control bit! but steroids dont work for me. i have been through the expectation stuff and have come out the other end. this ms malarkey is difficult isnt it?!

however i class myself as an ‘oldie’ now and may i suggest to stick with practising patience cos it helps more than u think…

however meantime do what u feel is right for-i support that!

take care, ellie

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Hi Ellie

Thank you for that. I know, in my rational moments, that ‘time will tell’. And actually, if I just concentrate on the now and not compare how I am now to how I was only a few months ago, then I am (kind of) OK. I’ve got a great Neuro who is looking after me well, so I am very lucky. I guess I am in that denial stage where it all still feels like its happening to somebody else when I talk or write about it - very weird.

Im looking forward to being an old-timer…

Thanks again, it helps hearing from others, definitely -

MonkeyGirl

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Sorry that you are having such a rotten time of it. I do not have anything to add to the excellent ‘hurry up and wait’ suggestion, and wish you well for clear signs of improvement very soon. It is lovely when the steroids get to work and things start going in the right direction. Hang on in there!

Alison

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Hi,try and speak to your MS nurse, sounds like you might have spasms in your legs, I thought mine were shivering but turns out spasms / spasticity. It might be you need some meds for that, I do. Sonia x oh, ps. I’m a PPMS’er but still find steroids help with some of my symptoms, I’m not sure with a beast like MS you ever really work it all out. Seriously, all day yesterday I had a feeling of hot watewr running down one butt cheek so I’m a bit freaked and not sure it’s even happened today… or did I just get used to it?! x

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Hi Monkeygirl hang in there…

I cannot comment about any steroid effects as when I had my episode last year I was never given any steroids to help. I walked/ drove around (naughty I know) and continued with work for two weeks before looking for any assistance. It was only when I googled stroke symptoms when I thought oo eerr I better get myself checked out and off to A&E.

The episode of numbness in my right arm and hand lasted for about five weeks I reckon, before any good feelings returned in said limb. What did start happening to me though was different sytmptoms started appearing, such as:

  • I would get massive sinus pressure build up behind my forehead and I also started getting stange auras in eyes. A bit like looking at the old kaledascope you might have had as a child. All I could do was lie down and close my eyes for an hour untill the flashing disappeared. I also started to get black floaters in my eyes and my left eye used to twitch in the corner like mad. My eye did twitch before that episode but nothing like it did afterwards. My eye sight in my left eye has also taken a turn for the worse and my vision is not great in the left eye.

  • I also developed a feeling of a tight band around the top of my right knee, it started last year around the same time and comes and goes, it feels like somebody has their hands around my leg squeezing tight.

  • I started getting severe spasms in the back of neck which felt as though my head was too heavy and my neck was unable to support my head anymore. My neck felt really hot and would just seize up as though somebody had their hand grasping the back of it. It was very uncomfortable.

  • I also suffered a great deal from constipation (unlike me, i’m a twice a day person TMI sorry) and severe stomach cramps as well over the period of a couple of weeks. I never have had any issues in that department in all my life.

  • I got the tight banding around my chest and also got this very strange internal shaking, where my body would just tremor from the insie.

12 months on and my neuro only recognizes the symptom where my arm went numb as a “possible” MS like attack. Luckily the auras have stopped now and also the stomach problems are a thing of the past. My right leg above the knee has not really improved and does cause me pain and grief on a daily basis.

I was asked to keep a symptom diary by my neuro and record “symptoms” as and when they happened. I produced the list on one of my appointments and I ended up sounding like a psycotit hyperchondriac and have subsequently stopped recording things now. I was given a phone number to the local MS nurses but each time I spoke to them I was told to go and see my GP. Not much support really, but that is what happens I guess when you are undiagnosed, only “probable” MS

Sorry for rambling, but the point I was trying to make is that it might not be the effect of the steroids and it might be something MS wise going on. I had about four months of strange things going on during my original episode and at the time I felt like I had been hit my bus. Also, like I was told by my neuro, it could be stress/ anxiety causing alot of things, although I was stress free and relaxed back then.

Hope you are back on your feet again soon.

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Thanks Alison. I’m looking forward to the improvement part :slight_smile:

I suppose that assuming that is a relapse and not something more constant, that next time round I won’t be so fazed by it all. I do feel a bit as if my body has been taken over by an alien being - who knew that just walking and talking could be such a skill. I won’t take my good health for granted, once it returns, that’s for sure.

Thanks again -

MonkeyGirl

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My symptons increased during steroids. In fact I got new ones! Whether that was just coincidence or not I dont know but I’m not convinced they worked for me. I did recover in time but it took a few weeks. Hang on in there

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Hi Sonia

Thank you for your thoughts. I am so new to,all of this, I wasn’t sure what name to give the leg shaking experience! It happened again today, lasted longer, but at least I had experienced it before so it didn’t catch me by surprise. I’ve got an appointment with my Neuro next week so I’ll be sharing my symptoms fun with him and I’m sure he’ll help with medication.

i do know what you mean about wondering ‘did that really happen?’ and ‘have I just stopped noticing?’ - it’s a bizarre condition, isn’t it? I hope that hot water feeling has really gone, and doesn’t come back.

Take care -

MonkeyGirl

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Hi humbug

Thank you for sharing your experience - it seems that is what has happened to me at the moment. Thankfully the actual treatment wasn’t too bad, so I don’t feel quite as frustrated as I might. I’ll be reporting back to my Neuro next week anyway, so I’ll let him deal with the ‘what to do next’ part! Hopefully this is just a blip and the good times will come soon. Thanks again, I don’t feel quite so badly knowing I’m not alone in this experience.

take care -

MonkeyGirl

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You will get better soon and come out of this relapse - hang on in there, keep reading the wonderful advice on this forum. Never had steroids but I am sure you will get stronger. Book a treat for in a few weeks time (that’s what I did - the girls and good wine!!), stay strong and sending you big hugs (though not MS ones as they are horrible!!) stacey x x x

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Hi number08

Thank you. Strangely, I’m not stressed, not in the way I normally am. I have a high pressure job and I’ve been doing it for years, so I know what stress does to me. I was stressed befor I was unde the car of my neuro, before I had treatment and so on, but now I knw I’m being cared for well, so I’m OK - my friends are rather amazed by how OK I am. But yes, stress definitely has its own set of symptoms. All of these extra symptoms I seem to be gathering do feel MS-y, rathe than side effects of steroids. I’ve decided to let my neuro make that call.

i know what you mean about sounding like a hypochondriac! I have been keeping a symptoms diary however, otherwise I know my mind will empty out as soon as he asks me how I’ve been! Me, who used to have such a brilliant memory, now goes blank in the middle of sentences… Aargh!

Anyway, thank you for your thoughts - I do appreciate it. I hope you’re doing OK -

MonkeyGirl

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Thank you, Stacey! A treat sounds like a brilliant idea. I quite fancy a nice, relaxing spa day myself… Mmmmmmm :slight_smile: