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Diagnosis of Ms

As I read more on here I become more and more confused. I have been diagnosed with ms. It is the different discriptions of people’s diagnoses journeys that seems strange. I do not understand why different neurologists seem to deal with things differently. Can anyone enlighten me ?

hiya sarah

if u asked 2 builders to build the exact same house they would do it slightly differently.

with our health we expect a good standard of care and treatment but like shop assistants and taxi drivers (random jobs plucked from my brain!) and medics are no different-humans affected by their own experience and interpretation of their training.

my first neuro was dangerous and shouldnt be employed in such a position. current one is grand. luck of the draw sadly…

take care, ellie

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Leaving aside the fact that some neurologists are c**k wobbles and do make mistakes, you have to remember that everybody’s MS is different and presents itself differently with different symptoms. For some of us (like me) there can be a massive “falling off a cliff” incident where all the pieces of the jigsaw puzzle are there quickly so there is little delay. With others, the progress to the “multiple” in Multiple Sclerosis is much, much slowed and much, much more subtle.

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It is not so much the case that different neurologists have different criteria - they all (supposedly) apply the same criteria - it’s more that people present so differently that applying those criteria isn’t a simple binary process. If you look at the revised McDonald criteria for diagnosing MS, you will see how many different scenarios there could be and what steps need to be taken in each of them. It is like a very complicated yes/no pathway"tree diagram" with loads of branches. If someone drew one, it would make the map of theondon Underground look like a single, simple straight line!

Umm, thank you both

Cocorange I get your point. But… A builder has practical skills… Impressive …but…practical. A shop assistant & a taxi driver…I respect. I work in retail & taxis are something all of us need to use at one time or another. But… A doctor is highly educated, I a sum to become a neurologist takes further training. After becoming a doctor. I get that MS is different for different people, BUT. I still don’t get the fact that different people have inconsistent journeys to the point that this forum shows. There is so much about MS that I get but also some that I don’t. Lol, I feel lucky, my diognosis journey only took a few months, it felt like a life time but reading others account it could take longer.

My issue right now is believing in my diognosis. Which I probably should have explained in the big inning.

Sorry about the missing ‘h’

hiya sarah

​believing it cos u think its wrong or struggling to accept thats what u have?

i dont say what i did lightly! i was a staff nurse for the nhs for 10 years-it certainly opened my eyes! its got much worse since i left. there are still some great staff out there-but they are under so much pressure. moral is at an all time low…and you finding them is a lottery. just my thoughts and i really do hope you find your answers sooner rather than later.

take care, ellie

Nineteen years and counting … still ‘in the dark’; despite a wonderful continuing (perplexed!) Neuro, and progressive disability.

Hi Sarah

The reason neurologists take different routes to diagnose MS is a combination of things. For example:

  • How they were trained. People are all trained in different ways, so the neurologists the individual learnt from is going to affect their methods. And their age is also going to be crucial in this, the teaching methods for doctors have changed, so the length of time they’ve been practicing will also alter their perspective. Plus, don’t forget that. neurologists have their own specialisms within the broad umbrella of neurology. So one neuro might be an MS specialist, with very clear ideas about diagnosis, others will perhaps have more experience with for eg Parkinson’s, or stroke.
  • Their own beliefs with regard to MS. There are so many ways of looking at MS, one neuro perhaps believes very strongly in the definitions of RR, SP and PP, whilst another thinks they are all just the same disease and dislikes the labels. Still another believes that there are in fact at least 2 different diseases involved, so to roll it all into just one model of diagnosis is wrong.
  • MS has so many different symptoms. We may share some similarities, but it’s pretty unusual to find anyone with the exact same set of symptoms as you. For this reason, a neurologist may concentrate on different areas to test depending on the symptoms you present with.
  • Don’t forget the poxy postcode lottery. Finance shouldn’t, but often does, play a part in how long the waiting list time is and could even (I have not a shred of evidence to back this up, but I’m going to say it anyway) be an element of cost involved in conducting different tests. Without a doubt, the diagnostic process from one hospital to another will be different.

Sue

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Ellie, Thankyou. Hugs. Also Thankyou to all who have responded. It means a lot. To be real, I have accepted my diagnosis, I wish I did not need to but…no one on here ‘wants it’. I have realised that I need to stop reading posts of those who are in limbo land. I am neither in the right place to support, or knowledgable enough to help at the moment.

What I find really hard is how I do ‘me’ who I am, what makes me me with the fact that I want /need emotional support.

i am a person who focuses on others, making them feel better, helping them to find positives in the shit life throws. Realizatdion over the last few months… Doing that makes me happy. So a little selfish. Lol, not sure how I feel realising that being supportive was actually selfish. P.s. You nice people please don’t do a me & try & convince me it was not about me.

the real point is… How do I get to carry on getting the happiness from making others happy when I am obviously ( can’t hide it a lot of the time) , physically and mentally not ok a lot of the time? And I need support for the first time & I am over 40.

i know one way or another I can get the support but… Can I balance my desire for support with my pleasure/need to make others feel better/ok. ???

hi sarah

i take an elderly lady out for tea (i have coffee).

she really sees it as a lifeline and i get pleasure out of it too.

basically all i have to offer now is my ability to drive so it’s great to have someone who needs what i can offer.

however my car is due to be taken off me due to PIP.

i’ve just discovered a new cafe in our area which we will both be able to get to without a car.

carole x

I totally understand what you mean. I’ve recently come to realise that what I do on this site has a massive impact on me, just because it’s a boost for me to be able to help others.

Obviously I’m not recently diagnosed. I’m a 20 year veteran, so I have more experience in the world of MS.

But there’s no reason why you can’t help simply by reading people’s posts, sharing your own journey, explaining your first symptoms, what happens / happened the first time you met your MS nurse or neurologist, what drugs you are offered, just everything that happens. Some of this is information only someone newly diagnosed can help with. Because life has changed so much in the years since I was diagnosed, only people diagnosed in today’s world can help.

Even just sharing with the forum members when you’re having a bad time helps. It shows others that bad times happen and what form these have taken for you. Plus of course, it gives the rest of us a boost to try to help you. This is the point to this forum, it’s about sharing the ups and the downs, it’s about community.

Another thing you could do is start a blog, writing down your journey from the beginning can also help people. Not today necessarily, but certainly in the future.

And you might find that time moves in a different way for people with MS, it slows down a bit. So don’t worry that you don’t have enough experience today to help, tomorrow you will have gained knowledge.

And of course there are the threads which are self indulgent, humorous, yet with a central core of support, like the Brain Fog thread on Everyday Living.

And the MSS fora are a mirror of everyday life. There are many ways in which you can probably help yourself by helping others. And by sharing your problems and figuring out how to resolve them.

Sue

That is such a thought-provoking point that you raise about whether/how an MS dx changes who we are and who we are in the world.

It does not seem obvious to me that a person needs to look powerful and strong and healthy in order to help other people through. They say that the best and most effective helpers tend not to be people who have sailed through life: rather they have been through the mill too, still struggle every day, perhaps, and know just how it feels to be not doing OK. Somehow they find a way to use the hard lessons that life has taught them to help others to find a way out of their troubles.

For sure, if you’re a paramedic or a fireman arriving first at the scene of a horrible accident you want to be radiating the powerful force-field of calm, in-control reassurance that tells the frightened and injured that it’s going to be OK - the grownups have arrived and will now take charge. That is their professional persona and a vital part of dealing with an emergency - it is a very important part of their job. But most of us don’t do jobs like that: we do not need our persona to look invincible in order to be able to help the people we care for.

My guess is that, if you are the sort of person who likes to help others (as clearly you are), you will find a your own way of keeping on doing it in a world that keeps changing. But please do not feel guilty about doing good: there’s little enough of it about!

Alison

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hiya sarah

i too am a giving person but…

i have learnt the hard way! in order to give then you must really get to know yourself-which you seem to do!

i would say be selfish but in the sense of that yuou need/want to strong to be there for others. if you are not strong in this sense then you and they will suffer.

i was on my own with 4kids (ages 2-12) and i love the aeroplane suggestion! put on your own mask before seeing to them, following discussion with several folk i understood this to be right! i have never been in hosp due to ms-despite the states i have been/am in. ms is not the first priority in my life-mum is my role. its only recently i have had family around-it takes a bit of getting used to!

theres a fine line between independence and stupidity! i know cos i have crossed it several times! i refer to physical and emotional well being.

knowing when and being able to say no and recognising that you need some you time is essential!

brill book recommended to me is living with enemy by ray owen-i am finding it very helpful!

it came as a shock to me that i am not wonderwoman but once its sorted in your head what u want/need to do then it does get easier, promise.

alison100 on here is a wise lady-i always read her posts!

ellie

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Newly diagnosed? Have you told anyone? Someone that you can thrash these ideas at? I have similar concerns…how will I be independent and helpful, feisty, outspoken, how will I be myself? Etc. I have so many fears about ms, questions, and apart from this forum, it seems that there is no support. I am worried now that I am boring the two people that I have told?

this forum though does help and a new diet and exercise regime has given me back some control. I am even going to try meditation?! I guess that I will have to work out a new me.

if you work, some work places offer counselling and your doctor find counselling too?

Keep sharing on here because people are truly knowledgeable. X .

Thankyou

Hi my MS was diagnosed after long journey 10 years as many symptoms could be matched with other conditions.

Iam also Staff nurse within the NHS and have the same difficulty as many in accepting I have this long term condition.

Over the years I have been sent to rheumatologist told I have Fibromyalgia ended up in hospital for 4 weeks with no mobility

told that time was my discs ended up in again couple years later finally neurologist involved who referred me to neuro surgeon

again going down the prolapse disc route but did ask the Medics to do head to toe MRI. Discharged 8 weeks later see

neurosurgeon who refers me to MS specialist who I get to see 2 weeks later to be told large areas of demyelination on MRI

head that working diagnosis MS. Arranged for LZp etc and I was formally diagnosed 7/7/17. Funny thing is for me everything

clicked into place Yes like anyone I don’t want this but have answers now don’t feel like I’m imagining things or losing plot.

Work have been great been back full time past couple months drained and very tired on days but off but determined to not let i

rule my life