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cannot be 100% sure its MS for anybody!

My Spanish neurologist tells me my symptoms are pointing to MS, although i am waiting for LP band result he says that with the mri and the eye test he is confident it is, asked if i can have this in writing, when asking him for 100% clarification he tells me no one with ms can be given a 100% diagnosis!

I have not yet been told yet it is definite ms, although i am sure myself, then can anyone tell me why last week when my walking was bad after 100 yards, after seeing my GP she tells me to go to a and e to be pumped full of steroids, when still no one has told me it is ms.

I refused the steroids as no one was going to explain why i was taking it. I wasnt acute as after i rest I am ok for another 100 to 200 yards. Is this classed as acute? Anyway, i found out i could have been given the steroids by tablet at home. But the idea of taking something when i havent been told what was wrong with me yet didn`t sound right. I am taking Baclofen but ONLY AFTER the neurologist that was on that day saw me walking after a while. He never asked to see what i walked like after a while I suggested it to him!

After several calls to my very busy Neuro he says he is not sure what i want to do as i refused treatment, ie the steroids, refused he says… He now tells me one of his colleagues told me it was ms, this same doc told me he was waiting for the lp final result and i had not had the eye test done. Therefore, no one has told me for def it is ms until the Spanish guy rings me and tells me it more than likely is!

Am i on my own now senor?

with the way i`m going i may need a wheelchair in 6 weeks, hope i am exaggerating of course but i was sort of ok 10 weeks ago, now i walk like i am on stilts after only a short walk/ bit of work/gardening. I am off work now and need something sorting but my appointment is 1st dec 2014 - to be told what? Have your steroids and shut up!

taking steroids can in some cases actually help with the final diagnoses, especially if they help. I was given IV steroids before being diagnosed as I was having a really bad bout of optic neuritis. I don’t think I was told its MS 100% but that it can’t be anything else due to the MRI and past history. No point doing a LP for me as all signs say its MS (and too risky having a bleeding disorder). You should be able to get a letter with your diagnoses on it when you are diagnosed which should be more then enough to confirm you have it if you need to prove to anyone, tend not to give letters if they think it could be something else. in some places the walking problems would be classed as acute, in others they wouldn’t be. I find it can really depend on who you talk to and where you live. (steroid pills taste horrible, taking some now and they are so bitter :confused: )

I was told by one neuro on ward the 5 days of IV steroids were equivalent to taking a years worth. wow, is that going to put you off? There was no real explanation as tho how much better i would be, and as i said no confirmation of MS had been given, written or verbally. I think i would rather have the pills than stay in hospi 5 days again. Some docs allow it to be taken at home.

Yesterday, I was told there was something wrong with right eye from the test i had, where you stare at a cross for a few mins.

The last 2 days i am having probs walking down the drive. Legs feel like lead balloons and i am a fit bloke, nobody seems a bit concerned now that i refuse the steroids. I went to a and e 3 weeks ago Friday night, nurse put a needle in my hand ready for the iv in the morning, that came out whilst i was asleep, and when the doc came at 10 am she asked me if i knew what the steroids were going to do, yeah right, course i do, she mentioned i may need a hip op in rare occassions and a load of other side effects and i was supposed to make a decision there and then. Dont think so, then when i saw neurolog. next day he said i probably made the right decision!

3-5 days fo IV is the usual. haven’t heard that it is equivalent to a years worth but most docs dont like prescribing either IV or pills more then a few times a year as they can cause bad side effects on their own. most IV steroids are given for a few hours and then you can leave go home and comeback next day

technically you did refuse the steroids but still should have been more informed about how they might help and effect you. you don’t need a confirmation to take them but it can help a person decide to take them or not. even with a confirmation you can refuse to take them if the side effects dont sound good to you, it is your body and you make the final decisions about it. you have to be on them a lot for them to start to effect bone density/ high doses for a long time can cause problems, but most doses are fine to take for a few days

if your walking is changing that badly, you probably should be taking something to try and help even without a diagnoses. sometimes you have to be really assertive/vocal/pushy about getting answers from GPS/neuros. they dont seem to be telling you a lot of possible treaments/problems and the doc at A&E seems to have been playing it really safe, and trying to scare you

Hi,

It is indeed true that there is no such thing as a 100% MS diagnosis, except by post mortem, which I’m sure is not the way most of us hope to go about it!

However, there are established diagnostic criteria which are treated as sufficient, in practice, for diagnosis, because obviously you do not want to have to wait for the patient to die before you can say what was wrong with them.

I don’t know what the position is in Spain, but in the UK, most neurologists still want lumbar puncture results to help confirm diagnosis, although NICE (the official organisation that sets out standards for diagnosis and care of patients here in the UK) make clear this is not essential for diagnosis, and in fact, being an invasive procedure, should be the exception rather than the rule, and only used where other evidence is ambiguous. I am diagnosed without a lumbar puncture (I refused to have one!) The diagnosis is perfectly legitimate, as I had clear symptoms and very typical evidence on MRI - plus I was tested for over 100 other things, all of which were negative - so further evidence was not really needed. It wasn’t a massive leap of faith to say: “If it looks like a duck, walks like a duck, quacks like a duck - all tests for ‘non-duckness’ have come back negative - then we can call it a duck”.

I think, if you want to be pedantic about it, any diagnosis of anything has a certain margin of error - mistakes do happen. MS is a difficult diagnosis, because there is no one specific test, so perhaps the margin is higher than for some other conditions. But it’s not high enough to make diagnosis impossible. It just means they like to gather as much evidence as they possibly can before committing.

I hope you don’t mind me saying, but in my opinion it may have been a mistake to turn down the steroids. There is no reason in principle why symptoms cannot be treated in advance of a definitive diagnosis. You do not always need to know the name of a disease before you can treat the effects. If it’s “highly probable” you have MS (and you yourself believe this), then it’s highly probable steroids would have been of some assistance.

“Acute” is simply the opposite of chronic. It has nothing to do with how far you can walk, or how long it takes you to recover afterwards. It just means you haven’t had these symptoms all the time, or for years and years, but there has been some sort of episode, or flare-up. Steroids are not usually offered for chronic (long-term) symptoms, because they have not been shown to be effective for that, but they can be effective for these short-term flare-ups (also known as relapses), helping to speed recovery.

Having said that, it is ALL they do. No study has found them to alter the extent of recovery, or the long-term course of the disease. In other words, if you refuse steroids, you will get back to exactly the same point you would have done if you’d had them - just more slowly. They help natural recovery, but don’t improve on it, except in terms of speed. So you don’t have to worry you’ve caused yourself lasting damage by saying no. You may have been putting up with things a little longer than absolutely necessary, but there will be no long-term consequences. Steroids have their own risks and side-effects anyway - so not all neurologists (or patients!) think they are worth it, given that they have no effect on the long-term prognosis. It depends how bad the acute episode (relapse) is, really. I have always said that if I couldn’t walk at all, or couldn’t see, I would have to have steroids, as I’d want to recover as fast as possible. However, if symptoms are frustrating but livable with, I’m patient enough to let nature do the work.

I find it interesting that you didn’t mind taking Baclofen, despite still not knowing officially what’s wrong with you, yet felt it would be “wrong” in the case of steroids. Although they are completely different classes of drugs, both are really just about trying to control symptoms as far as possible, and not about fighting the underlying disease. So if you were willing to accept one, why not the other?

Apart from steroids, there’s really not much that can be done about an acute episode (relapse), so it’s either that or wait it out the natural way. Sorry!

Tina

I wish the doc would have put it this way. I am in the UK, its just the neurologist is Spanish.

The neuro that was on duty that day saw me walking perfectly, he probably thought i was taking the pizz as i looked like there was nothing wrong with me, apart from when he did his tests with his mallett etc… I was the one that suggested i walked in the corridor, well i made it up and down 4 flights of stairs. When i returned to the ward he broke off from another patient as he wanted to see me walk and said he was glad he did as there was spasticity as I looked like i was on stilts (small ones!) and straight away he suggested Baclofen and i thought ok what can that do wrong. No suggestion of side effects, until you read the notes as with most drugs. I am still on half a tablet 3 times a day and its got worse, head is spinnin a bit now.

Sorry for all this as im sure most have been through this.

As for refusing the steroids in hindsight it was not a good idea but at the time i wasnt as bad as i am now. Take into consideration up until 10 weeks ago i was running up and down roofs, carrying heavy ladders. Even then i was down to half day but i was still getting my work done, and tripping over every so often, clumsy or what. I knew there was something a miss because i have had walking probs for over 5 years but i usually got to a mile before i noticed anything.

My knees have just started to give way but thats probly to do with the wrong type of excercise. Physio gave me some stretches for my drop foot but not doing much to help. Does this sound familiar?

Hi, the thing about baclofen, is that as it reduces stiffness in the muscles, it can sometimes relax them too much and cause falls…as happened in my case…but I was on much higher doses than you.

Hope you get better answers soon…I was tested many times and nothing was ever found to prove MS, even though my symptoms were very typical PPMS.

pollx

im gonna ask doc if i can come off it and wait for my neuro visit and pop the steroids, cant be only one to take em can i. Rather take the tablets though, but i spose its up to him what he recommends, or gets paid for most!

Did you find your walking was better after taking baclofen?

pollx

no, its getting worse by the day now so no point takin it.

hang on hun…how long did you take it for? It does take a while to work…and the dosage may need to go up a bit…when I said I was on more than you, i`m talking about 70mg a day!

poll

Hello again toby

Hang in there, it won’t be long until December. You could try contacting the neurologists secretary and let them know how unwell you are feeling. They may be able to bring your appointment forward.

Worth a try

blardy ell, 70mg! i was worried when in the hospital a nurse gave me a full one thinking they were 5mg when they are 10mg. I thought i was going to od.

i have rung the neuro and he is going to get me in earlier than 1st dec, i think this appointment has just got mixed up in the system, saying that, if you dont get on the case with his secretary you get nowhere.

Thanks for all the repllies, bet you get this with all the newbies lol