How long did it take you to 'come to terms' with your dx?

Everyday living
41

Hi. Here’s another thing which feels weird:- My elderly mother was admitted to hospital yesterday with a chest infection… So I spent hours and hours there, fortunately with my husband. She had to have loads of tests before being prescribed an antibiotic , oxygen treatment, and observation. Fortunately it’s our local hospital; she’s been there quite a few times so I know the drill. It’s the time waiting in A & E first which is a trial, especially for elderly people, who really need to have someone (family or friend) with the, and often don’t. It’s exhausting for everyone.

For the first time in my experience, I used the ‘I have MS’ label there on two occasions. Firstly when the loo was occupied and I asked where another one was, saying I needed one nearby as 'I have MS and need it urgently. That worked as I was able to go to one that was more conveniently situated. Secondly, when my mother needed to get off the trolley on to a commode. It’s always difficult to get the help with this sort of thing from the busy A & E staff, which is why as a patient you need someone with you who is prepared to be quite pushy, IMO. I asked a staff nurse, who said ‘well, why can’t you help her?’ to which I replied that I have MS and can’t lift her. I used to say on these occasions, before dx, that I have ‘back trouble and can’t lift or push wheelchairs’, which is absolutely true, but I sometimes felt that I was being looked at as if I was just being lazy/couldn’t be bothered. When you mention the MS word no-one is going to challenge that.

It felt strange though, as I don’t have any visible signs of MS. I suppose this is one of the things that you get used too!

Louise x

42

Having MS doesn’t have much to be said for it, so we might as well take the smooth with the rough where we can.

I hope that your mother is OK. I know that ‘old person to A&E’ drill very well!

Alison

43

I have a card from the Cystitis and Overactive Bladder Foundation for these ‘needing a loo urgently’ moments. Fortunately I’ve never needed it, but it’s in my purse. Is there anything similar for MS?

Louise

44

I haven’t as yet been diagnosed, its only been 29 yrs, so still too early to tell!!! I had 6yrs of tests initially for non existent back problems, so had bone scan, xrays, etc. Even had plaster cast corset in one of our rarest hot summers!! It was only through my gp insisting on me seeing a neurologist, that I eventually got a diagnosis of inflammation of the central nervous system and even that was only after being told that I was a neurotic housewife who needed to focus on going to work rather than a diagnosis. At least my gp believed my variable problem with symptoms that appeared and then disappeared when you were due to see the neurologist. That was embarrassing, to say the least. You feel as though, even though they don’t, that your family even doubt your ill. Funny enough, last week when I saw my gp about a relapse that I’m currently experiencing, she requested my paper records for my ms test results and I finally found out that the MRI showed no lesions, so perhaps I was a neurotic housewife. Perhaps all my symptoms are in my mind. Sorry, rambling as pain felt is very, very real at the moment. I would love a diagnosis of ms, as it would confirm all of my stupid, random and intermittent symptoms. As long as you’ve support around you, you can get through any diagnosis. Good luck and take every day as it comes.

45

After 15 months and currently suffering a relapse, at the time of diagnosis I didn’t really take the time to come to terms with my diagnosis. I threw myself back into work and as normal life as I could. I choose to ignore it… not the fact I have MS, as I could talk to people about having it and even joke about my future, but I never really dealt with how I felt inside. This is my first relapse since the diagnosis and all those feelings I felt then locked away have come back.

My initial diagnosis was a whirlwind… a rarity I know for most of us diagnosed. One day my eye had stopped moving within 5 days I found out I had MS (Other symptoms again that I had been putting down to things like misuse of contact lens or the tingling in my hand as my old football injury mixed with an MRI scan). So I didn’t get that sense of relief some people get after months or even years of waiting for a diagnosis and I think this is why I just choose to ignore my feelings as I hadn’t prepared for anything like this… as far as I haven’t really had many health complaints in my 25 years of life up until that point.

But on the other hand it has made me more determined to reach certain goals in my life.

46

Is it possible to have MS without lesions showing up on the MRI? I can’t remember if I’ve read this.Long term sufferer, how outrageous to be told your symptoms are due to being a ‘neurotic housewife’. At the very least you should have some investigations for chronic pain. There are chronic pain clinics and consultants. My mother and niece have had experience of this.

Gribs, you are so young…I don’t know what to say…I have a 28 year old daughter and 23 year old son and I do now think ‘well, what if they were to get MS’ - although my MS neuro told me not to worry about it. Please get all the help you can with dealing with the emotional side of it. And as the neuro said to me - it’s a ‘good’ time to be dx’d, because there’s lots of treatment options and hope these days.

Louise

47

Hi Lou,

In answer to your question, it is possible to have MS, but no lesions show up on MRI - but only in the early stages.

Almost certainly NOT after 29 years, I’d say. Basically, the longer you have symptoms, the more likely something would show on MRI - it can’t stay invisible forever. Demyelination is damage, so if you’d been having it for decades, that damage couldn’t stay undetectable.

I don’t mean LTS isn’t ill - just that the odds are overwhelmingly against it being MS, if still nothing shows after such a time.

Tina

48

Hi Anitra, trouble is in the fact that I haven’t had any other tests since 29 years ago and as my GPS been dealing with my symptoms as and when they arise, so they don’t see the point in referring me for any tests as they know its ms. During that time 30 yrs ago, the government decided that neurologists were diagnosing anything neurological as ms, so they changed the guidelines. As such, I had raised levels when I had a lumber puncture and delayed response in optical tests, but no lesions in the MRI, but as that was indeed early on. Maybe if I had another mri scan, there would be lesions, I don’t know.

Lou, just don’t think a diagnosis is everything. That’s what I thought, only lack of a diagnosis and having a heart to heart with my gp, who has told me that they know I’ve ms even if I haven’t got the formal diagnosis. I’ve found that ms falls into three camps - 1. Where you need medication to help control the various symptoms; 2. Where you need practical help from your family, friends to maintain your day to day lifestyle, which obviously may need tweaking or even changing completely and 3. Mental support, when you want to rant or for advice but are afraid to upset your family. My biggest problem is I am reluctant to ask for help and then that has repercussions later on, but that’s just me. Good luck.

49

I think that’s just not good enough: “no formal diagnosis, but they ‘just know’”.

I fully appreciate that when you first began to have symptoms, we didn’t have all the diagnostic tools we have today - in particular, I’m not sure MRI even existed!

But now that we do have the technology, I really don’t understand the stance of: “There’s no point, because we ‘just know’”.

You’ve probably captured it in your last line about being reluctant to ask for help. A formal diagnosis might have qualified you for Disease Modifying Drugs (I’m not plugging them, as I don’t take them anyway - but nice to have a choice), might also have qualified you for an insurance payout, if you had a critical illness policy (which many here have had), and would have afforded you some protection from discrimination at work - assuming you have worked or tried to work at all since 1995, when the first Act addressing disability discrimination became law.

So diagnosis is not (always) purely academic - and “Oh, we’ll treat the symptoms anyway!”, but might have had important personal benefits.

Are you still interested in getting it confirmed? If you are, you’d be quite within your rights to push for an up-to-date scan! And the other thing is, if it didn’t show lesions, after all this time, it would totally undermine what they’ve claimed to “just know”. You might have something else altogether, and they (and you!) have been working under a false assumption for years.

Of course there were times when we couldn’t prove anything, and had to rely on experts “just knowing”. But those days are long gone. Absolutely no excuse for telling a patient: “Ah well, you don’t really need a diagnosis; we’ll just take it as read, shall we?”

Aren’t you at all curious whether the evidence does stack up now, or whether you might have something different - treatable, even?

Tina

50

Hi Spluff

No, it was Dr Klepsch.

She doesn’t appear to sugar coat things which is just as well - I don’t have the patience for it. We discussed what is going on with my CNS, that the CIS has resolved as far as it is going to go in the 12 months since I first presented, that she had discussed it with her colleagues and that that a relapse would be required for a clinical dx (she doesn’t like Lumbar Punctures - doesn’t think they are a clear enough indication for the amount of time/effort/discomfort etc.)

So, for now I get on with my life, if nothing happens over the next, however many, years then great. If on the other hand I do have a relapse I feel quite comfortable knowing that I have a Neuro that is on a similar wavelength to myself and I will get on my life with a different level of abilities.

51

You’ve hit the nail on the head there. Of course, I’m interested in getting a proper diagnosis, just never been offered the chance. Perhaps I’ll ask tomorrow when I’ve a follow up appointment with my gp to increase the gabapentin. I think I had spent nearly 6 years having various tests as the GPS were convinced that I’d trapped a nerve in my back as I was getting shooting pains and falling over. When they referred me to the first neurologist in Bristol, I was convinced that I was finally going to get a diagnosis. I didn’t even care what it was, just as long as they could ease the pains that I was getting. Again, WRONG, as ms doesn’t cause pain, so first bubble burst! Was admitted for tests ( lumber puncture, MRI, optical tests), and then told that the government had tightened up and because the tests had come back as inflammation at the base of the scull, base of the spine and there was some inflammation of the brain, but all lower than the new guidelines. As such, I was told that I had inflammation of the central nervous system. Don’t laugh, but I only found out two weeks ago that pain is indeed a common symptom in ms. My gp who has been looking after me, prescribed buprenorphine for me 29 years ago and baclofen for spasms. Each new gp in the practice has prescribed different painkillers, but I’ve always gone back to the buprenorphine which has allowed me to continue working and leading a normal life. I have a mobility car as without it I couldn’t travel as im too tired. I suppose really, ive been too busy to chase a real diagnosis, but it would be nice to be validated.