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Opinion? Do I want a diagnosis

Hi all,

I am just looking for opinions from people who have been diagnosed and from people in limbo.

I had my first MRI and lumber puncture 18 years ago and they found some scaring but the lumber puncture was clear, so no diagnosis. I have lived with intermitent symptoms since then, fourtunately none of the symptoms have stopped my living a normal life. But this year I noticed L’hermittes sign, I only googled the symptoms last week.

My question is, as the title suggests, do I want a diagnosis? I know no one can answer that question apart from me, but I was wondering if there is anyone out there who has had a diagnosis and wished they hadn’t got one, there is a post here about 3 year driving licence because you have to inform the DVLA after diagnosis. I would imagine things like holiday isurance would be expensive because after disgnosis you would have to inform them. I just feel that afetr diagnosis life would become very complicated, not being able to do the same things because you have been diagnosed with MS but you are completely capable of doing them.

Is there anyone in limbo having these thoughts? I feel I can live with these symptoms, lets face it, if I did get a diagnosis I would have to live with them anyway.

Interesting question. I would say that once symptoms really affect your life then of course a dx can make a huge difference… for instance if you’re not well enough to work and need to claim benefits of critical illness insurance.

Secondly, if you have (or think you have) RRMS and the symptoms affect your life, then there are drugs that can help the symptoms… so a dx then could of course help.

If symptoms were not being a problem and you could live a full life but just the occasional but manageable problem, then perhaps it would be better to go without dx… of course knowing that IF things change you could go the dx route.

In your situation I would do just that… carry on regardless with a knowledge that if more difficult MS symptoms pop up you could then go and see a neurologist.

Interesting post… thanks for that.

Pat x

I am in limbo no diagnosis as of yet. Would I want a diagnosis? yes because it would open the doorway to potential treatment if available for the type I am diagnosed with.

I do hope and pray its not “ms” the last few months have been horrible.

I’ve wondered about the pros and cons of a diagnosis too. I had Optical Neuritis a couple of years ago when I asked about MS the consultant ophthalmologist said it wasn’t very likely and not to worry about it. I’ve had some other symptoms this year and didn’t get any answers from the GP but when they continued and worsened I have been referred to a neuro. But I have been thinking what am I hoping for? An MS diagnosis means informing the DVLA and probably having to put some effort into renewing it every 3 years (for as long as possible) but that shouldn’t be much effort. They aren’t going to refuse until I’m not fit. The positives that I have come across are necessary for consideration of Disease Modifying Drugs to slow progession down and a free bus pass possibly (that might help when I’m feeling tired but it can be quite a quite a walk to and from bus stops).

Best wishes,

Jonathan

Insurance wise the other thing to consider is that you have to inform the company of any investigations, even without a diagnosis. Therefore an MRI would throw up some questions anyway. My travel insurance was straightforward - they covered my whole family and for an extra £34 it includes MS cover. Car insurance hasn’t changed. The only big issue is critical illness cover (not able to get cover even excluding MS) and life cover (expensive!). I prefer to know so I can get the treatment I need when I need it! X

Thanks for the replies.

Pat, when you replied I looked at your profile and I see you have MS but you are not taking medication at the moment because of an adverse reaction. Has being diagnosed helped with your MS? I think from what I understand your diagnosed MS is pretty bad, yes? It’s just I read a lot of things on here where people have been to their GP and I get the overwhelming impression that a lot of Doctors / medical people think we are just making this up.

At the moment I am having L’Hermitte’s sign and tingling in my left hand and a hot / cold / wet sensation occaisionally in my left forearm. For information I haven’t had a day off work in ten years. To be honest as I write this I feel a bit of a fraud but I suppose a lot of people fell like that in limbo.

At the moment I work in the UK and south America, say roughly 4 week in SA and 2 weeks in the UK. I feel that if I was to have a possitive diagnosis I would have to tell my employers, it is a big organisation and if I continued to travel, had a problem and hadn’t told them, I would be in trouble, I think.

From reading everrything on here I am stuggling to find a reason to get a possitive diagnosis, or am I missing something? Would my GP be able to prescribe something to ease or get5 rid of the symptoms I am experiencing now? Thoughts would be appreciated.

Very interesting post!

I’m 29 undiagnosed but have seen a neuro had 2 MRI’s, no LP - ? inflammation of the spine, non-sepcific brain lesions.

Why do I want or need a diagnosis?

My symptoms are fairly mild compared to a lot of people (which I’m thankful for) but there have been quiet a few; pain on L side of body, facial pain, urinary problems, bowel problems, the hug to name a few. So I guess even though they’re not severe all together its not the best for a 29 year old and they do stop me from enjoying some of the things I liked to do (I’ve found other things now) and they impact my quality of life.

Also looking back to last year before my significant episode (nov 11) which prompted neuro referral I think I had signs of symptoms earlier. As well as that since my episode in Nov 2011, I’ve had two other episodes of symptoms and at the moment have been suffering because I’ve had a chest infection which has made all my symptoms go crazy.

So I guess what I’m saying is as I’ve more than one symptom and more than one epsiode of symptoms in my mind I don’t think this is going away. For me finding out whats wrong is important - at least I feel in control and can try and help myself once I know what I’m fighting. A diagnosis will give me help for my symptoms, something to explain the sick leave if I get worse, drugs to delay the disease if I’m that particular type, therapies (physio/pain clinics etc) if it’s MS. If its not MS then even more important to find out as there are gentic conditions and other things that can mimic MS which could be quiet simple.

Me and my partner had a long chat about this topic. And yes 3 year licences are an inconveniance, yes the price of travel insurance sucks… but these are all minor inconveniances compared to the thought of sitting back and doing nothing and letting whatever I have slowly make me get worse and worse.

I would say whatever you decide it has to be a personal decision it has to feel right in your gut. Only you know how many problems or symptoms you have and if they impact your quality of life enough for you to want those answers right now.

Whatever you decide I wish you the best of luck.

Reemz

X

Thanks Reemz,

I suppose I am in limbo limbo, because I can’t decide what to do in limbo. I am lucky that it does not effect my life too much, ok I can’t be too far from a toilet but other than that I can manage, I have to keep reminding myself I am 45, I have never been in pain with this. I just can’t help thinking that putting a name tag on this will not benefit me at the moment, maybe in the future I will have no choice but I don’t think it will help now. I understand that the final decision is mine but thaks for your thoughts anyway, much appreciated, at least no one have come back questioning my sanity!!

No problem :slight_smile:

I certainly wouldn’t question your sanity. I can understand why you don’t want to go there. If my symptoms had just stayed at the episode I’d had in nov 2011 - I guess I may have been tempted to do exactly what you’re suggesting. X

There are only two situations in which I would question looking for a diagnosis. One is when there are no extra benefits to being diagnosed, e.g. when the person is already getting all the therapy, meds, care, etc they need and all they are lacking is a label for their condition. (Major exception: a parent who doesn’t know if it’s genetic or not.) The other is when they don’t need any therapy, meds, care, etc because their symptoms are so mild they don’t actually affect their life and this is very unlikely to change. For everyone in between, I think the benefits way outweigh the costs.

I’ve probably missed things out, but I think this is about right:

Benefits:

  1. You know what’s wrong.

  2. You are able to better explain yourself and your symptoms to others. (This includes the government: it is easier to get DLA with a diagnosis than without, for example.)

  3. You are protected by The Equality Act. (You have the right whether or not to tell your employers. If you do tell them, they have to make “reasonable adjustments” so that you can stay in work. Plus other stuff.)

  4. You have easier access to meds. (For people with RRMS who meet certain criteria, this includes DMDs, disease modifying drugs, which can reduce relapse rates, reduce the severity of relapses, delay disability onset, slow progression and increase life expectancy.)

  5. You have easier access to therapy such as physio and speech therapy.

  6. You get an MS nurse.

  7. You can claim for critical health.

  8. You get access to MS Society (and other) resources, such as grants for adaptations or mobility aids.

  9. You get access to the MS Therapy Centres.

Costs:

  1. Three year driving licence (this is only really a problem for people who have HGV and other non-car licences and doesn’t actually cost anything).

  2. An increased travel insurance premium.

  3. Potentially increased premiums for other health-related insurance policies.

The thing about MS is that it might be quiet for years and years and then suddenly get active. If you are diagnosed and “in the system”, it is MUCH easier to get help. Yes, there are inconveniences about being diagnosed, but they are minor in comparison to that.

Just my view of course. Others may disagree.

Karen x

Hi everyone

I have just posted another thread about how I always end up crying at the GPs. I got told today (not for the first time) that it is “very likely I have MS and would prob get new meds when I am diagnosed”, and I burst into tears (again).

Having thought about it because of my symptoms (and about not alot else) for the past few months, I really thought I was ‘ok’ with this and had accepted it with a kind of ‘what will be, will be’ attitude. Obviously not! If I am truly honest I still feel scared about the future, and what will happen etc etc.

As I am not diagnosed yet, I still try to convince myself that the neuro is going to tell me I have some inflammatory condition in my spine, will give me some tabs, I take them and get better. But I also keep thinking that I need to be sensible and start thinking about the future as there are things I want to do (travelling and skydive mainly) and I need to be prepared to do them sooner rather than later.

Do I want a diagnosis, well of course not, but then again, I do want to know what is going on with me.

P xx

Hello,

I have responded to your emotions thread.

With regard to diagnosis…of course u don’t want MS but for me I was glad to get confirmation.

I then knew what I was dealing with, although no one can predict how ‘your’ MS, if it is MS, will evolve.

One of the suspect diseases I had, was worse than MS, so was glad that it wasn’t the other.

I found it easier at work once I had clarity and just with people in general, it became easier, once I was given the label.

Yes, it’s tough but I focus on the positives, live for today bur remember that there is a big future in front and try to keep myself well, rest plenty etc.

I have adapted my life but still have a life.

I wish you well.

Clare x

hi

i was glad of my dx at the begining of march…answered all my questions as to what was going on…ok i’m now on a 3 year license but still working as a taxi driver and just been awarded higher rate mobility and this has given me the chance to change my family car for a brand new one!!..just trying now to make the best of a bad situation and get on with and enjoy my life no matter what it throws at me

would rather not have MS at all but i’m stuck with it now…

take care

baz

Hi Anon,

A good question, one which I think really depends on the individual, what their symptoms are and how much of an impact their health issues have on their lives.

No one wants to be ill and having a ‘label’ won’t change that but what it will do is give that person access to medications, treatments, specialist help and support services, all of which can make a huge difference to how they feel and give them a better quality of life.

When I was much younger I certainly didn’t think I’d be struck down with ms or anything else - no one does - but it happened and I was diagnosed at the age of 39. It only took 6 months - which compared to some is very quick and although I’m thankful for that, I’m still trying to work out whether it was a good thing or not?!

Obviously I’d rather not have ms but, I do. So yes, I think I’m better off for knowing about it. I’m lucky that I’m very well looked after by my nurse and neuro and for the last year or more I’ve been seeing one or other of them every two months - which I know isn’t the norm. That does kind of scare me, but on the other hand they deem it necessary at the moment so I go with the flow.

So, the answer to your question is very much a personal one. All I can say is that if your symptoms are having a big impact on your life and you’re struggling then yes, persevere. There is help to be had and life may change but having a diagnosis doesn’t mean that life as you know it will stop.

Good luck

Debbie xx

Dear Anon,

I was recently diagnosed and, for me, the 2 biggest benefits were:

  1. At last I knew what I was dealing with. I found not knowing very hard to deal with, and imagined all sorts of things much worse than MS.

  2. I could at last tell people what was the matter with me, rather than “There’s something wrong with my legs” :slight_smile:

So, for me, I welcomed the diagnosis. I knew I was ill and was happy to know what it was.

Best wishes

Dave