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relapse criteria, murky waters and the ever changing tides of depression

Everyday living
#1

im looking for some intel.

Im wanting to know who “calls the shots” ,criteria-wise in the nhs, with regards to deciding on relapse criteria?

I seem to present knew symptoms as time goes by but it always seems like when i tell the neurologist they always like to put spin on it. Words like “pseudo-relapse” are used and then im sent on my way.

Similiarly, i find new lesions on a scan but im told “not to worry”

I cant help but get angry with these people and i despise the fact that im at their mercy. I refuse to believe they have my best interest at heart, which is prevention of disease activity. We all know that its much harder or impossible to fix things once they go bad.

i need to start changing the game. I need to find out whos calling the shots at the top end.

Is it the drug companies? do they determine specifically how their drugs should be prescribed?

Is there a committee of “clever” neurologists that decide the rules?

How might i go about influencing them?

Is it total bonkers to think i can sue the nhs on the grounds that they are depriving me of preventative medicines?

#2

raymond

ms is far from simple. nobody knows is the reality. however your frustration and need for answers are very real. its down to luck in finding a person that you ‘click’ with. that may be a gp, physio, ms nurse, etc who will aid with addressing ur frustration.

re preventative medicines-their effectiveness is too varied for each person.

the only person you can influence is yourself. i dont say that lightly but from life experience!

be kind to yourself.

ellie

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#3

You might want to read this and think about changing you neurologist - some are up to date and will label any disease activity as a relapse. Others are like yours.

You can ask on here, giving the area you live in and asking people to Private Message with names of good neuros who are not too far away.

#4

I get on well with my my nurse, but there’s very little she can do in terms of influencing people higher up the chain.

Ive had ms for 7 years now, diagnosed when I was 21. It would be diplomatic to say that I’m sick of banging my head against a wall and that I now have to escalate my efforts to try and stop the disease.

i do want a different neurologist, but even more than that I want the right to have my say in how my ms is treated.

I don’t really give a shit what these people think, I don’t respect them, and I think very little of their ability to help people. They are literally glorified pharmacists I my eyes, only as good as the drugs they dish out.

I know this might sound harsh but it’s one thing to be mediocre and in your own world and a completely different thing to get in my way

#5

raymond

glorified pharmacists?! OUCH! i willingly put faith in a pharmacist over a neuro!

what exactly is that you want somebody to do for you? getting anybody to listen to you with the attitude that u r giving on here i would think is slim. who is getting in your way?

re banging your head on a brick wall-its bliss when u stop! that does not mean giving up but trying something effective rather than painful and repetitive!

just trying to offer an alternative-always ur decision!

ellie

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#6

Im good at hiding the true poison that bubbles away under the surface from nuroligists etc.

as for what I want? Quite simply I want them give me a hsct.

In order to get anywhere near trial criteria I will need to have failed a second dmd, so I really need them to start paying attention. I’ll play their daft wee game, but it kinda takes 2 to tango

#7

Why not Lemtrada?

#8

raymond

i really dont what the problem is but i would/will never play any game with my health!

hsct-my friend tried that-sadly hes no longer here to tell you of his experience.

i hope you find some peace, holding on to anger is like holding on to hot coal, you’re the one that gets hurt.

ellie

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#9

Raymond, you call the shots mate, you take treatment offered or you choose not to. MS is known to p**s people with it off, it likes negativity & stress. The more you rage, the more it consumes. Neuros will advise on treatment, offer what they can, but remember, unless they actually have MS, their knowledge comes from text books. We are all not the same in our suffering, granted some symptoms can be universal so to speak, but everyone is unique, it affects us all differently, what’s your main concern may be a whole lot different for say, me. Angry you may be, but you are in control of your treatment, don’t think I would take drugs if they were not absolutely needed, you may need to rely on your own investigations of what’s available & then put it to your neuro, see what their answer is, pseudo is very different from relapse, it has many factors that need ruling out 1st, before nasty drugs are given. Tracey

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#10

i hear you, i know the risks, its the risk of not getting it that worries me the most.

Anger can be very motivating though

#11

i know it might seem like i just want to blow off some steam here with this thread, but please, believe me i genuinley want to know who makes the criterias and if there are any ways to influence these people (obviously excluding money becasue i have no money or id have got hsct years ago)

#12

raymond

you have been lurking about this site as long as i have! even if u r letting off steam-then good if it helps.

now-who to influence? even if u get a medic to listen to you then you will need to convince the health board its money well invested in by them. hsct is too variable i would guess.

have u seen this…

ellie

#13

I agree with what (I think) Raymond is getting at.

We have the different categories of m.s. but when we analyse them they are far from accurate - as I’ve asked before what type does the guy with say a left leg which is slowly packing up but a right leg which is sometimes weak but sometimes strong have?

have those dx’d with ppms not had periods of ill-health from which they recovered in their past?

what is the link between brain lesions and actual disability - does a ‘new’ lesion mean more disability?

why have we no reliable data on the efficacy or otherwise of these very powerful drugs we may be offered – for instance I’d like to know how many pwms are on say lemtrada and how are they faring -

No one is to blame for the state of things - but why can’t the neuros admit that most of the time they don’t really know what they’re doing!

#14

krakowian

thats when i consider myself very lucky (and unfortunately its all down to luck)-cos neuro and new gp do! we are all guinea pigs-their words-but i welcome their directness and it allows us both to get on with our very different lives with no expectation!

false hope is cruel! i much prefer straight talking but many do not. ho de hum eh?

ellie

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#15

hi yeah i know, its been a while now.

Yeah id seen that before, did stella not go abroad for it though? (not that this alone makes the treatment unsafe)

I know the dangers, im still a relatively young man though (28) do you think that bearing this in mind it would be more likely that i would be ok? yes? no?

#16

i more or less agree.

There is no coralation between lesion (brain damage) and disease activity/symptoms. But brain damage is still brain damage in my book.

Eggs is eggs ,as they say…

#17

hiya raymond

i have no idea how it would affect you.

my friend was only 50. his ms was very progressed so if tried 20 yrs earlier? who knows-nobody bloody does and thats the prob!

you take care, ellie

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