not sure if the steriods are helping

New diagnosis and before diagnosis
1

hello. a year and a half ago i had a ‘MS’ attack. whilst it wasn’t diagnosed as that and was called an isolated event it was explained that from the MRI scan they found a lesion at the top of my spine. I was given a steriod drip and went home. The symptoms became worse for awhile and then eventually I recovered pretty much back to normal.

Last Saturday it came back, similar symptoms but instead of just my left side it is now my right side also. I went to the doctors who, after the third visit gave me five days of oral steriods to take, they’re a low dose I think, only 5mg. She made a referal to see a neurologist but that wont be for months yet.

I was yesturday starting to feel as though the symptoms were settleing down abit. But then a bad arguement with my boyfriend, who isn’t exactly being supportive or helpful, has left my symptoms feeling worse. Maybe because of the stress, maybe because I didn’t sleep much.

What can I do? Should I be on more, stronger steriods?

I can’t walk, have tingley legs, have a strange pressure headache, left eye ache, fuzzy hands, some strange head wobbely sensation. I feel terrible emotionally.

After my boyfriend walked out I’ve been on my own, no idea what to do, with the possibility that Im going to be diagnosed MS in the back of my mind all the time, and really have no idea what should be happening now to help myself.

It just feels to be getting worse.

Any advice would be amazing at the moment, I wrote on here last time it happened and it was a big help.

I hope everyone else is doing ok x x x

2

hi amy

i’m sorry to read that you are having a rough time.

definitely stress makes it all worse, try to avoid arguments at all costs

maybe your gp could prescribe something such as an anti depressant.

mine gave me citalopram during the diagnosis period.

i now take amitriptylene which also helps as pain relief.

carole x

3

thankyou. yes, the reaction to the stress of the arguement was pretty instant! I’m waiting until tuesday before I can call my doctors and i’ll be sure to mention an anti depressant. Anything that helps at the mo will be a great thing x

4

thankyou. yes, the reaction to the stress of the arguement was pretty instant! I’m waiting until tuesday before I can call my doctors and i’ll be sure to mention an anti depressant. Anything that helps at the mo will be a great thing x

5

Hi I’m not DX yet but had this flare for 16 wks, it had nearly gone but went for my lumber puncture 2 days ago ( didn’t go we’ll ) became very stressed and yes a lot of my symptoms flared up almost instantly . Now 2 days later and a lot of rest almost gone again, so as others have said stress really does feed this. So take it easy and hope you feel better soon Gray

6

Hi Amyleetee,

I’ve not so far been on steroids, but from what I read of others here, it does sound as if you’re on a very low dose.

BUT, it’s not essential to have steroids for a relapse at all. They can help speed recovery, but there’s no evidence they improve the end result - i.e. how fully you recover, or influence the overall course of the disease at all.

So if you have been given a dose that’s too low to work, you should at least not worry that it’s causing lasting harm - it makes no difference to how you fare in the long term.

Relapses, or “attacks” can last for many months (although it can be as little as a few days). So as it’s only been a week, it might be a little early to be expecting major improvements - even with steroids.

As you are not diagnosed yet, and have experienced a second “attack”, there seems to be a case for bringing forward your neuro appointment, and not leaving it “several months”. Can your GP arrange this? Normally, neuros want to see a CIS patient (one who’s had an “isolated event”) again, if they have further episodes, as this could be the evidence that enables a diagnosis, and/or opens the door to treatment! I know waiting lists are long, but I can’t see why they’d leave it months if the patient is actively relapsing, and could potentially be diagnosed.

Stress of all kinds does tend to aggravate MS symptoms - even outside relapses. I’ve not had one for ages, but old symptoms still surface if I get stressed, because the repairs aren’t perfect, and show more when you’re ill or under pressure.

So that certainly won’t be helping things, but again, you shouldn’t worry that it’s causing lasting harm. It isn’t doing additional damage - it just makes the damage that’s already there more noticeable. Most illnesses feel worse with stress, but MS is particularly known for it.

Relationships really aren’t my forte, so I don’t know what to say about the bf, except that if he’s not supportive in a crisis, and only adding to your stress, perhaps he’s not “The One”? Having said that, I accept the possibility of serious illness places great stress on a partner too, so it’s possible he might still come good, once he’s had a chance to get his head around it.

I’m imagining you both to be quite young - though I might be completely wrong - so I’m guessing he would not have had much life experience that would prepare him for something like this. It’s not the future he’d expected, any more than it is for you.

I hope you see the doctor again soon, and push for an earlier neuro appointment. I’d leave the bf on the back-burner, for the time being, as your priority has to be looking after YOU, and not exposing yourself to avoidable stress.

Tina

x

7

Hi Amy! Sorry to hear that you’re having such a tough time. If I am perfectly honest, as things are tough going at present, it’s probably a good thing that your boyfriend is out of the picture. I assume that you do not have any children or dependants to worry about? MS is a massive load to be lumbered with and it has to be managed very, very carefully. You absolutely need to think about your relationship and whether it is good for your own health to consider salvaging it. Personally, until you have a definite diagnosis and treatment program in place, I would steer clear of all negative energies and influences. Use your time alone, to look after yourself. Any form of stress will precipitate an MS relapse, so you MUST avoid stress, like the Plague. As for the steroids, 5mg is a very low dose, but GPs will always start with a low dose; effective enough to control the symptoms, but low enough to avoid any possible side effects. Following my diagnosis in June, I was prescribed 1000mg x 5 of Methylprednisolone for 5 days. That was a massive dose, but made virtually no difference to my symptoms. Not surprisingly, it just caused a urine infection that required antibiotics. Get pro-active now! Look at your diet and make sure you’re eating all the good foods and that includes the vitamins and minerals too. I can recommend several very good books (let me know!) You mention that you cannot walk. Are you experiencing spasticity? Baclofen or Terfenidine Hydrochloride are effective treatments for this. Good luck and keep strong. Tracyann x

8

Hello again,

Thanks to all you lovely people who replied, it really helps to know there are people out there reading who know much much more about this than I do at this stage.

Well, things got worse after I messaged. Symptoms cranked right up…just could not walk, heavy fuzzy wobbly strange head full of pressure, neck ache, tingles, leg cramps and involuntary shaking of my legs when touched or hear an unexpected noise. my legs goes crazy, i lurch foward, my breathing gets irregular and i end up crying. Takes me minutes of slow breathing to calm it all a little.

So I got scared, panicky. Everything was rushing fast around my head, I was home alone, I couldnt stand to cook for myself, I couldnt sleep due to it all so I rang 111 for advice.

As I haven’t yet got a diagnosis, and because of the range of symptoms, the paramedics came to take me to hospital. So Im here in hospital again :confused: Since Saturday.

I’ve had doctor after doctor hitting me in places, I suppose testing reflexes, and it sends me into a shaking, irregular breathing, hypersensitive crying mess :frowning: I still can’t figure out how to walk. It just feels so strange and overwhelming to walk, leg my legs are made of lead and no longer attached to my body!

Eye pains, head aches, wobbly vision, irritability, slurred confussed speech at times, crying then laughing ten mins later. Im having one hell of a crazy time here!

So after the doctors finally decided to stop prodding and poking, they have just said rest, stay still, and will will try get you an mri to see if its another scaring, then give you a steriod drip, then home to wait for a neurologist appointment.

Stil waiting.

The doctor has now said he feels it could be anxiety fulled as anxiety presents similar symptoms. I feel fobbed off almost like ‘its in your head’ when i physically cant walk and i am physically hypersensitive. I explained it feels more that the physical difficulties cause anxiety which feeds back into my physical sympotoms worsening. I have been given a mild relaxant to try help me caaaaalllllmmmmmm. and we are waiting to hear from a neurologist to go ahead with the MRI and take it from there.

I feel the hospital environment is making me worse…I am next to a women who snores 24/7 since i’ve been in! theres lots of noise and stress around me, people groaning and crying and shouting. I am regretting coming in as i just want to go hid in bed away from this and just chhhiiiilllllllllllllllllllll.

But. If I wasnt here i would just be bed bound at home for months until i receive a neurology app. and i’d be woried and stressed still and non the wiser.

Should I stay or should I go???

Oh, and a bit about me. I am female, aged 27, I have two proffessions, one as a counsellor/therapist and the other as a carer. I have one son who is 7 years old. These two ‘MS’ episodes, if that is what they are, are my first experiences of illness (apart from flu and colds etc)

That was a long post! I am having the craziest emotional and physical rollacoaster ever. how the hell do you amazing people cope?! my god, new found respect for anyone anywhere who feels less than well. Our health is EVERYTHING!

ALL MY LOVE TO EACH AND EVERY ONE OF YOU XXX

9

oH and the boyfriend? We fight like cat and dog. he’s a big souce of stress for me and I for him. He ended up coming to hospital, argueing with me, leaving me, then coming back. After I explained that I just cant handle any negativity at all…that it feels like i am stripped completely bare with no protection (which is what it sort of is for my nerves) he has been back and he’s been calm calm calm and a really source of love and hope and gentleness.

But I know for sure now how important it is to have gentle love and not aggressive love in our lives, and if we cant stop our bickering at such an important time then we will just have to stop.

For the first time ever, and from now on, Im being 100 per cent selfish. hurray!

xxx

10

Amy, this is my first post here but our symptoms and situation are so similar! I too have left side numbness/tingling creeping to the right now and can’t walk properly. I called 111 for advice and was brought to hospital nearly 2 weeks ago. They tried IV steroids but I am still getting worse. They have told me they think i have MS but wont do the test as an in patient. They want to discharge me in a worse state than when I came in and still progressing and the pain is not under control (gaberpentin not helping). Really despairing like you right now. Not sure my post is helpful in moving you forward but sending you virtual hugs from someone going through exactly the same thing. Offy xxxxxx

11

Eshhhhhh! It’s all very confussing and very scary. Im still in hospital, so its been 6days and still waiting for an MRI scan. I have been given Diazipam as I have been very irritable due to being hypersensitive to EVERYTHING, mostly noise and touch. A car driving past feels like a helicopter is about to land in front of me! The diazipam was as the consultant said some of my stuff was anxiety, and the other stuff was possibly MS. Still cant walk, and I know once they take the diazipam away ill be back to what i was when i came in. For me they have said its unlikely ill get steriods, ill just get an MRI then I will go home to wait for an appointment with the neurologist. Very very frustrating indeed to not leave with a diagnosis, and to go home the same way I came in, maybe wore aftr the stress of hospital.

For you I can only say that my first attack, a year and a half ago, I was not walking for two weeks before hospital, i was in hospital a week not walking, i had the scan which showed the scar, i had a steriod drip for three days, and went home still not walking. At home my symptoms became worse not better for awhile, maybe a few weeks, then settled down until eventually i was back to my old self…until this one happend…huff!haha!

So keep in mind, that whilst its getting worse, it can and might go full circle and get better like mine. Im so relluctant to say anything as I know nothing about this, I have no official diagnosis (although they are talking to me like it is MS) and I’ve only had these two accute attacks. I dont want to advice or say the wrong thing as Im sure like me you are feeling desperate, frustrated and scared.

If its poss, look back to my posts last year when it was my first one then you can read how it was for me and see if it helps?

I wish I could offer you more than this reply but Im not in my right mind at the mo with the pain killers, diazipams, no sleep, crazy crazy symptoms and hardly any sleep, plus a huuuuuuuuuge emotional rollercoaster.

Can only say Im sorry you and others are going though this, and myself, its a real scary and lonely place to be in. And I wish it didn’t have to happen and that things were different because at times it feels truely hellish. I suppose we can take comfort that we are going through similar, at the same time, and so in a way we are not so alone with this.

I feel for you and hope things get better for you real soon. Message if you want to ask me anything or for whatever.

amy x x x

12

Oh yeah, and for anyone who’s reading who may know, I have been wondering…

1.) this attack had allready started and was pretty bad before my arguement with my boyfriend. But the arguement seemed to accelerate it. if we hadn’t have argued would it have got this bad anyway?

2.) if this new attack because there is a new scar on my brain/spine or is it symptoms of the old scar suddenly coming back for some reason

Nobody can prob answer these but I am basically led around wondering… did I cause this? would it have happened anyway? has the arguement caused more damage to my old scar? is it all just the natural progression of a new scar?

Basically, do I have any control over these attacks?!

I have this horrible thought that keeps coming…that it’s all my fault, I’ve caused this somehow by having a stressful few months.

But then I remind myself that when the first attack happened I wasnt really stressed at all. I think that started with the flu virus.

As you may be able to tell, I dont really understand how this all works at all. Anyway… -x-

13

Oh yeah, and for anyone who’s reading who may know, I have been wondering…

1.) this attack had allready started and was pretty bad before my arguement with my boyfriend. But the arguement seemed to accelerate it. if we hadn’t have argued would it have got this bad anyway?

2.) if this new attack because there is a new scar on my brain/spine or is it symptoms of the old scar suddenly coming back for some reason

Nobody can prob answer these but I am basically led around wondering… did I cause this? would it have happened anyway? has the arguement caused more damage to my old scar? is it all just the natural progression of a new scar?

Basically, do I have any control over these attacks?!

I have this horrible thought that keeps coming…that it’s all my fault, I’ve caused this somehow by having a stressful few months.

But then I remind myself that when the first attack happened I wasnt really stressed at all. I think that started with the flu virus.

As you may be able to tell, I dont really understand how this all works at all. Anyway… -x-

14

Thanks for your reply. I will try to find your original posts. I haven’t been particularly stressed recently so I don’t know what brought mine on. I finally saw a neurologist again yesterday and he said to be formally diagnosed you need another lesion and episode, and I got the impression even more criteria, but I’m sure all this is somewhere on this site. Unfortunately Internet access is dreadful in this hospital which doesn’t help. I did get referred to a psychologist as I wasn’t coping well with the news/symptoms/way i was being treated, but they said there weren’t many so don’t expect to see any! Hang in there, I guess it is all we can do and hopefully someone else can actually help you. Offy

15

are you out of hospital now then?

x

16

No still in and now been diagnosed with clot in the calf to add to my woes! Other symptoms still getting worse.