Started on methylprednisilone last Thursday afternoon, 500mg for 5 days, first day was ok, the rest went downhill fast, my arms are bruised up badly after I tapped them slightly by walkin in the door frame, I can’t keep any food or drink down, migraines are killin me, I can stay up for no longer than 10 mins at a time then I’m walkin drunk n hit the floor, the pain in my legs is worse and I now have to use both crutches to keep me upright, I took 30mg of lanzoprazole everyday to help but it did nothing, bin tryin to call my dr but no appointments for the next few weeks, my ms nurse is busy all the time and I can’t get any help from anyone, I’m stuck not being able to get out the flat, can’t eat or drink eithout beeing sick and can’t keep anything down, I need help and can’t get it, I’m now a hell of alot worse than wat I was before I took the bloody steroids, didn’t get anyone saying that if things go bad then ur allowed to call for help, no warning or nothing, its take these tablets, I hope they work but we don’t think they will coz uve bin in a relapse too long and off you go. I need help
Please ring the gp surgery back again and INSIST on a telephone appointment with a gp. I find if i cant get an appointment then quite often my gp will ring me without too much fuss. You really can’t keep struggling like this without some help. Make sure you make the receptionist understand how important it is to speak to someone as soon as possible. Teresa.x
I’m sorry to hear you’re having such a rough time. That doesn’t sound like the normal side effects of steroids which aren’t pleasant at the best of times.
You either need to ask for a telephone consultation with a GP so you can speak to them today or if that is’t possible I would call the new NHS Helpline on 111 and explain the problem to them. If they think you need further medical intervention they will point you in the right direction.
The fact that you can’t eat or drink isn’t going to help your overall health apart from all the other symptoms that are playing up. You sound at serious risk of a nasty fall and being stuck at home on your own must be adding to the anxiety. Isn’t there anyone locally that come and keep you company just to make sure you are safe during your waking hours?
<> I hope things improve for you very soon
Mum n dad are both disabled n I look after them, my bro is at work n doesn’t wanna take a early home time, my sis is pregnant n works full time so can’t help coz she’s havin a bad pregnancy, the drs receptionist said they don’t know en someone maybe able to call me back as they are busy at the moment but they will try to call today if they can, I’m makin myself eat n drink just to get somethin in me altho its makin me Ill, gona call the other number n see if I get help, can’t go into hospital if that’s needed coz I got too many ppl rrlyin on me to look after them
You need to contact the gp and make an appointment ASAP or insist on a phone call and explain to the doctor everything that’s happened. I have my own experience of methylprednisolone which was only without the last 2 weeks. I started taking it and felt ok for the first day and then felt awful - thankfully managed to get hold of my consultant on day 3 an he told me to stop taking them straight away which I did. It seems a lot of people on here seem to have had a bad reaction recently to the oral methylprednisolone for some reason. I felt awful afterwards and had to go to hospital and have blood tests done and an urgent brain MRI scan and having a lumbar MRI next week. It seems the steroids did nothing for my symptoms except make things worse and now the dizziness I have is ongoing. So my advice definitely insist on a phone call from the gp - don’t leave things as you could end up doing more damage especially by not being able to eat or drink. Let us know how you get on - my sympathies are with you because I know how crappy the steroids made me - never again will I take the oral steroids!!!
I’m sorry, I appreciate your sister is pregnant so she needs to take care of herself but why isn’t your brother being more help? I think I remember you saying before that it all falls to you to take care of your parents but the extra stress certainly won’t be helping when you are so seriously ill yourself. Does your brother understand just how ill you are? If you have a fall and (heaven forbid) injure yourself you could end up in hospital and where does that leave your parents then?
Your brother really needs to take his share of the responsibility. I’m sorry, I don’t mean to rant at you but your brother is making me so cross. What will it take for him to realise that you cannot do this all on your own? Have you shown him the literature about MS to make him realise that stress and fatigue make everything worse?
When you do get to speak to the GP, please explain the predicament at home and see what can be done about arranging some help for you. Even if you could just have a bit of me time for a few hours a week it would take the pressure off. I can’t imagine having to care for two disabled people in the middle of a nasty relapse when what you need is rest.
I hope the GP did get back to you today, please let us know what is happening. At times like this, you need someone on your side looking after your best interests.
Tracey put it perfectly. The is help available with carers etc so make sure the gp realise how much you are struggling so that they can arrange some help for your parents and yourself.
Ditto that! Like suggested before, the 111 number is worth a try too.
I felt battered and sore all over when I’d finished my 5 days but the sickness on top sounds horrendous
It sounds to like you need some Paramax (basically paracetemol with and anti-sickness element, you mix with water and it’s effervescent) I get those for migraines and they sort me right out when I get ill with anything sicky, the first time I got a similar type drug was when I had a flu type bug and took a cold treatment - my sinuses reacted badly so headache & vomitting… my GP at the time couldn’t really diagnose me but could see I was really sick so gave me the sachets.
I thought worth mentioning as once you start being sick you get the catch-22 situation and struggle to recover.
Hope you get some help and feel better soon
Don’t know if you have been given this advise b4 but with the sickness try coke full fat not the skinny stuff or lemonade with the bubbles shaken out…if you can manage to keep that in you system for at least 10 mins you are getting lots of sugar and should help towards not feeling so week, doesnt matter if your sick after 10 mins or so, hope this help
update, sorry it hasnt been sooner, i saw the drs, they are testing me for diabetes, i have a nasty throat infection, tuesday my throat felt like a football was stuck down it, dr gave me antibiotics, throat numbing spray and some great anti sickness tablets that dissolves on my gums, so now im on a diet of milkshakes n milk, n ice cream, legs are still shakey, took me 25 mins to get to the shop wen it normally takes bout 10 mins, that was a journey, im feeling a bit better in myself now and all im doing is resting up and begger all else at the moment, mum says IF the time comes i cant help out as much then she will get in touch with there social worker to try to arrange extra hours (thats a god send) so things are starting to look a bit better now on all fronts, got it down on my medical records im not to be given methylprednisilone tablets anymore as i had a bad reaction to them. in this heat i got myself a lil hand fan (battery operated) that i now spend more time cooling my cat down than myself, hes decided as soon as he hears the fan, then its time to lay down on the coffee table ready to get fanned n cooled down hahahaha hes not stupid, so anyway thats my update and sorry it took so long
saw dr on wednesday, gettin mixed up with days at the moment, flippin stupid, collapsed at mum n dads tuesday n saw the dr on wednesday, my brains gone on strike
hi elmo, bout my brother, hes got the attitude of hes working full time and has a life and family of his own, so basically dont bother asking, he knows exactly how bad things get and what things do to me, but hes got his head so far up his own backside that he struggles to hear other peoples needs, you get used to it, but at times i want to kill him, came close to knockin him out once tho, mum and dad had to have a word with him to get him to lay off me with his attitude which was good.
I’m sorry you collapsed at your parents but at least now they realise how poorly you are and maybe they will come to see that you can’t keep coping the way you have in the past.
I’m pleased you have seen your GP and you will never be given those steroids again. Hopefully you are on the mend now and things will improve quickly when the antibiotics get to work.
As for your brother, one day he may need help himself and I hope you don’t go rushing to his aid. I had two sisters with the same attitude as him; they are still about locally but I no longer class them as family. I was in hospital twice and one of them didn’t even phone. My parents were both chronically ill and they didn’t visit and when mum died they didn’t even come to the funeral. At that point I decided enough was enough … I’m sure they will need me before I need them.
Keep us posted.
Oh and I love the way your cat has decided the fan is for his benefit . That’s typical cat behaviour.
Hi, I really think your mum should get in touch with that social worker NOW and get extra hours. It’s clear that you’re suffering and you can’t keep all this care up on your own. Love the cat story, they’re so clever aren’t they. Take care.
thanks elmo n fudgey37 yeah murphys too clever for his own paws, especially now i cant even trick him hahaha, i got in touch with social services about 3-4 months ago i think to ask them about being registered as disabled due to the ms and the mental health problems i have, they said they will send the form to the drs and just have to wait for a letter saying either yes or no, im thinking of getting in touch with them again to see if i can get some help, i dont know what help i can get though, i mean i try to do everything myself, spread my shopping over 4 days to get it all, now buy microwave meals instead of cook, apart from the odd freezer pizza that needs cookin in the oven, i dont go out any where apart from shopping and mum n dads, got no friends, so i dont need to worry about being asked to go any where, im isolated and ive been like that for years that im used to it now, but i know im struggling, i dont want to ask for help when i cant point my finger on exactly what and look a idiot, the oc said they can take me to the ms mondays by me a couple of times so i know how to get there, then they can assess me with stairs n stuff n that its going to take a few visits, but i havent been, if i go it will only be the twice they take me, i get really scared and panicky if i have to go to a strange place alone, this place is miles n miles away, so thats out the question, theres nothing closer to me either
Hi again, Do you find it physically hard to go out and do the shopping? Could you do your supermarket shopping online and have it delivered? I’m sorry that you feel so isolated. I guess I am lucky as I have a supportive husband and my mum and dad are always concerned about my health ( they are elderly now 73 and 81 ) but I say I’m ok as I don’t want to unduly worry them. Do you drive? I actually passed my driving test 26 years ago but only started driving 3 years ago and I will only drive an automatic. I am much like you in that I do not really have any friends apart from husband etc. but I’m afraid I’ve always been a bit of an unsociable person… I don’t know what to say to people, hopeless at small talk and seem to gabble on about nonsense so people must think I’m stupid. I get so nervous if I have to meet anyone new. Regarding getting more help, I would just tell them about a typical day and what you find difficult and let them figure out what you need, that’s what they’re supposed to know, it’s their job. You’re probably just like me and worry about what other people think of you.
i try not to do online shopping unless im ill, it helps me to still go out by doing the shopping, i used to be able to carry 6 bags of shopping but now, its limited to 2 bags of shopping per trip, or 1 bag if its for buying pop, not much strength in my arms now, my 6yr old niece is stronger than me, i cant drive because me eye sight isnt very good, so i have to get taxis to get about, i cant use the bus’s now as i keep getting panicky and closed in, ive managed to work out the quiet days and times to go shopping so im not around too many people at any one time. i go shopping with mum every other friday to help her get her shopping, i dont get on with people either, with me they tend to wind me up so much that i just want to knock people out, thats where the mental problems kick in, short fuse and easily p’d off over stupid things, so ive learnt its safer to stay away from people as much as possible, hence the isolation, i dont mind what people think of me tho, ive got the attitude of if they think im stupid or that im not worth it, then they can go jump, i know i need to see people to get help, but i also need them to stay as far away from me as possible, which causes a problem, tried cbt twice before to help and both times i got worse not better
I don’t have a lot of faith in cbt, I’m sure it works for some people but I’m going by my sisters experience with them. She’s got a personality disorder and has been diagnosed with a chemical imbalance in the brain which makes her have extreme paranoia, she thinks everyone is going to attack her verbally and physically and if she doesn;t take her meds then she just huddles in a corner and cries. The meds are just about keeping her stable but I’ve got a suspicion that she’s not taking them regularly. She also has ocd ( for about 35 years ) which she keeps trying to bring under control and the doc organised her to talk to a counsellor but she tells me she thinks the counsellor gets fed up with her talking too much !!! She’s getting no better seeing this counsellor and it’s been over a year now. GP won’t do anything else at this stage so she’s on her own as far as care is concerned. Unfortunately she’s in a relationship with a man who is absolutely no good for her at all and she’s been 10 times worse since being with him, we’ve tried telling her but she won’t listen. It’s like talking to a brick wall and as she’s nearly 50 I can’t make her leave him. Sorry to go on about my sis but it makes me despair that there seems to be little patience or understanding by some of the medical professionals where mental illness is concerned. If you don’t respond to therapy then they want to wash their hands of you. I tell her to get a cat (she loves cats,) they make you feel better ( I’ve got two ) but the partner won’t let her have one.