Huy guys x I posted the following in Poll’s thread and would really like to know ‘why not’??? xxx
I haven’t been well with symptoms for a few years but it was last November that a couple of consultants started mentioning MS - everything then seemed to fit like a glove!
Like lot’s of others my MRI showed lesions but in the wrong place - and like others my biggest fear is to be left in limbo for years without a diagnosis.
Personally I think that there should be another ‘type’ of MS added to the classifications to cover those people who have MS symptoms & neurological signs but no ‘physical’ evidence in the form of MRI’s or positive LP’s.
I may be being simplistic here but I see no reason not to!!
If everything else has been ruled out - and If it looks like a duck, swims like a duck and quacks like a duck…then it’s highly likely to be a flippin duck!!!
I’ve heard the description Atypical MS - why can’t something like this be added to the classifications???
That way the neuro’s will feel comfortable and people with MS without visible lesions will have a diagnosis and most importantly have support and treatment for their symptoms. They can also then be monitored with MRI’s every year or so to see if anything shows up?
Hi Jen I agree with your post but we probably are being naive. I have ms type symptoms and a physical exam which is abnormal but a clear mri. I think in these situations people will want to find a way to be diagnosed with something so that they can get treatment and start to feel better, i know i do. At the moment i have been given amitryptiline for the nerve pain but thats it, all my other symptoms i have to cope with. Claudette x
I am going to be discharged from my neurologist on Wednesday with the duck still quacking.
I am still getting over my last episode at the beginning of June - poor eyes & speech, twitching and walking slow - I feel a bit depressed about it all really. Ten years of dr’s saying, “Well this isn’t right…”
To continue with the duck(ling) analogy, they won’t normally do this in case it turns out to be a swan (a very fine swan indeed!). There is an (arguably destructive) amount of personal pride, ego and reputation at stake in a lot of neuros eyes - they don’t want to write the wrong thing in your notes and a colleague have to prove them wrong (which also results in an ethos of never contradicting a colleague). Plus, far more importantly, a diagnosis usually means the end of investigations and the start of treatment etc. What if they get it wrong? It would be a terrible disservice to the patient, never mind potentially negligent and dangerous (eg some drugs used for MS are seriously bad news for other neurological conditions). So, better to be cautious more often than not. If something’s not an emergency, then time will reveal all in the end - there’s no rush (in their eyes anyway!). The other reason for caution is that someone with a negative MRI and negative LP very probably doesn’t have MS - the odds are less than 1%, even with a positive clinical exam. (And if they have a negative clinical exam then they more than likely have a functional disorder.) After all, there are literally hundreds of different neurological conditions, all causing similar symptoms. Some people with negative results do get a diagnosis of MS, but (as far as I know) this is only when symptoms, pattern of symptoms and clinical exam fit perfectly with MS and everything else has been ruled out. Ultimately, a neuro’s job is to diagnose and treat - they do screw up at times, but they are not ever going to do it deliberately, so sometimes that means waiting until the ugly duckling grows up. Karen x
Hi Jen, I know that it’s hard but hang in there, I I don’t say that lightly. I agree that limbo is torture but what is the alternative? Not all msers take DMDs . I don’t. Amatriptyline is my only poison. I couldn’t wait for that elusive label and when it came, along with it came despair, why me? What about my kids? Our planned future? My poor husband got no support from his family and whilst mine rallied round, everyone offered to take my kids, this just made me even angrier. The whole thing is a mind bender! Someone said to me the other day that at least in limbo there is hope! I bet they wouldn’t be brave enough to say that on here!!! I hope you get sorted soon, but I’ve yet to hear a duck that barks! Chis
Yes I quite understand you frustration but unless you get a Neurologist who is prepared to put his reputation on the line by being a rebel; and there’s not many of them; we have to stick with there apprehension.
Not good you could say they’ve not made much headway since Charcot discovered MS in 1861 or you could look at it like this http://www.bbc.co.uk/news/health-16362314
It’s not so much me - I’ve only been ‘at it’ really since last November!! x
I’m thinking of the people who have been in limbo for 4, 6, 10, 14 even 40 years!
I’m not saying at all that ‘they’ should diagnose everyone with MS like symptoms with MS!! - but so many people have had everything else ruled out - they have the symptoms - and as I said the neurological abnormalities are there - to me the neuro’s should have an option!
I’ve heard so many say that their neuros etc etc say it’s 98% MS - but can’t/won’t diagnose without the MRI’s - some of them have had positive LP’s as well!
I just don’t see what the problem is when it’s all stripped down - there are rules regarding drugs for people who have been diagnosed with CIS - It’s cruel to withhold drugs that could help them - I’m not talking DMD’s - fair enough there should be strict rules governing these - but GP’s are refusing other MS drugs too!
Think I am a duck, ok I might not always quack like the others- Clear MRI, but I am no fish! I know Drs don’t want to give out a wrong diagnoise but looks like loads of people are in limbo because things do not fit 100 o/o. I thought it was the thing with MS that it effects everyone differently and people progress at different speeds? Even if I am mad or a hypocondriact, think I would have been happier with, I am not sure, but looks like probable MS, we will monitor you and give you some drugs or CBT to help you deal with the symptons. After all it does tend to be a progressive disease and can take years to properly show its self. I do not want any hand outs, but would love to be able to do the school run! In the mean time, I will continue to waddle and quack and croak and quack my way along!
Hiya, no I don,t think your being naive, while some sort of label isn,t the be all and end all regarding the symptoms the way we deal with things psychologically is bl***y hard without a label. I,m a long term limbo lander, 17 years, I walk like a duck, quack like a duck but my MRI says I,m a Rottweiler : D (clear anyway). I feel my personality has taken on that of a Rottweiler over the last 8-9 months. I,ve been doing the rounds for the last couple of years trying to get help for my symptoms but for me personally seems without a label no help is available, I come on here and read how people get help with symptoms and get so frustrated that I seem to be getting nowhere. My Neuro who I used to see locally has always said he believes I probably have MS but he,s in a dilemma how to help when he just can,t confirm it. My GP referred me for a second opinion and I wish I hadn,t bothered, I just have got to the point now where it,s all so pointless, hubby says go to the Dr I say what’s the point they bat me from pillar to post and round and round we go over and over again it,s a flipping nightmare. Even my GP says the so called experts are fobbing me off, I,ve managed fine for donkeys years until the last couple of years particularly the last few months and it seems my coping skills have disappeared with my worsening symptoms. I think for us what we need is some support to help those of us in this position, instead we get fobbed off with nowhere to turn. I do understand the difficulties in diagnosis, think i know more than the medical professionals haha, but for those of us who fall into this category I wish someone would just understand that it,s so hard when you feel you have nowhere to turn, thank the lord for this forum. Marie
I have to agree. totally, with Karen’s post. Neuro’s have to be sure it is what it is before they can diagnose. I am still going through tests. Only one lesion found and still waiting on my LP results. If I don’t get a diagnosis then I am just going to have to wait to see if I relapse, which could be years…or never! I sure don’t want to start on any powerful drugs for MS if it is not MS.
It isn’t nice waiting but better to wait until they are sure. Until they have concrete evidence in all areas so there is no room error.
Granted, I have only had one MS-like attack and it was only in March and I know others have been waiting years but we don’t always know their whole story, only whay they say here. There could be very good reason why they are not yet diagnosed. We don’t know what their neuro’s are thinking or doing.
There is strict diagnostic criteria that has to be met first. Lesions and positive LP being two of them, that will add weight to a diagnosis.
Other pepoel’s battles, are other people’s battles. We have enough of our own and can’t fight everyone’s corner.
Not sure if my point is coming across to well really, but what I mean is, if this is about you then a diagnosis can’t be rushed, if it is about others then they have to deal with that themselves and there is no point upsetting yourself on someone else’s behalf. You have enough to deal with yourself.
Some ducks may be in disguise and it’s never as simple as “if it looks like a duck it therefore must be” . Things don’t always turn out to be what they look and sound like. There are so many different species of ducks (neurological conditions) that all need to be considered and ruled out.
The flip side of what Karen wrote is that once you have a diagnosis, you are usually stuck with it.
Let us say that some insensitive, incompetent, almost useless, health service professional (surprise, surprise, there are some of these about) puts two words into your notes - neurotic and hypochondriac - just because you have pushed for a diagnosis. You will forever be treated in the light of those two words, unless you can find someone to start from the beginning and look at what you actually present with.
If you get a new GP for whatever reason, (s)he will pick on one of those two words (their choice, not yours) and that is you labelled and ready for the appropriate treatment. Your next appointment will either be with a psychiatrist or a social worker (or, horror, both).
So, “probable MS” means just that - even if it does bar you from some of the available treatments. It could be worse. Parkinsons can be diagnosed from a set of symptoms that resemble MS quite closely, and a favourable response to one drug. That is it. The label is applied and the patient is stuck with one drug. A “probably” diagnosis does keep some options open - and you can also ask for a second opinion or go private (but the same unwritten rules may still apply).
Reminds me of a story my Dad used to tell me when I was a little girl called ‘Dipper The Dunk’ about a little duck who had a hard time because he couldn’t quack properly, he could only ‘quonk’.
Wish I could remember what the moral of the story was, will have to see if my Dad remembers it. Perhaps he was an MS limbo duck!?
