Despite not being diagnosed yet I’ve been put on steroids to try and ease this latest sh*te-time which is probably an MS relapse. Although I’ve never been more than 75% well since last October and symptoms have been pretty continuous with milder and worser times thsi is different. This last week I’ve been feeling myself getting worse and worse and iller and iller, much closer to my first attack in November/December which is a very scary thought indeed.
This is my first time on steroids and it will be interesting to see if it helps. Doc said I will need a lumbar puncture. Holy cr*p.
I so want to wake up and it’s all been taken away forever - as indeed we all do.
Oh no im so sorry. Cant believe they gave u steroids. what are ur symptoms? i lost my sight in my left eye cos of optic neuritis (v common in ms) and i didnt gt steroids! I hope u are ok
I was diagnosed 7 weeks ago now and yes it is scary but if it is that dont worry u will get thru it.
Im new to all this as well bit similar to you started to “suffer” Dec - had fist lot of oral steriods started with 8 a day for a week then went to 2 a day for 2 weeks & they did help.My legs stopped hurting so I could at least get some sleep.
Got formally diagnosed May & had my first lot of IV steroids over 3 days. Very naively or stupidly thought next day I would be back to normal but no - thankfully someone had posted on here that it can take up to 6 weeks to feel the benefit so I stopped worrying that I would NEVER feel better & they were right now nearly a month later and I do feel much better not as good as I did before all this but alot better than I did.
So my advice is give them a go & good luck with the LP.
Yes it would be good to wake up & it has all gone away - but hey maybe one day.
I was on steroids too. Didnt really have too much of an effect on me to be honest. Luckily. I have had Optic Neuritis for over 13 weeks and am feeling pretty awful too… tho not dx. Life has changed for me too in the space of 4 months. Very different as my eyesight is rubbish now and I have today been told by my GP that I should not be driving at all… to be fair I was only driving when my eyesight was ok. Good luck and take care xx
I haven’t had ON although my eyes ache and twitch. There’s a big difference between having symptoms but in the main being able to do stuff and feeling really ill with it in an attack and having to take to the sofa/bed pretty much. At the moment I have: buzzy feet/legs and pelvis; burning feet and other odd spots; myoclonic jerks; twitchy muscles; weak left leg which buckles beneath me; stiffening spasms of right leg mostly; aching muscles prob as a result of the spasms; numb bladder; that painful headache/pressure from neck up to temple on the left side; an electrical like ‘zing’ noise through my head; sporadic pain in ribs; weak, heavy arms; waxy feeling skin on my hands; excessively tired.
Quite a list and feel shizer.
Since January I’ve had lots of those symptoms bubbling away in the background but have still (apart from long walks etc) got on with work and stuff. Nov/Dec I definitely couldn’t and I can’t now. Hope it doesn’t last long, have definitely had enough of it all now.
Interesting to hear steroids might not work straight away if at all
No experience as I haven’t been put on steroids though my neuro thought I’d had an episode of spinal inflammation last october.
I’ve been working myself through out the whole process Deb and at times it had been a struggle. Thank fully my managers quite supportive and encourages me to leave early when it’s feasible or come in late.
It’s scray having aq relapse and feeling like you’re not in control. I hope you feel better soon and the steroids start to work.