Worries & How important is getting a DX quickly?

New diagnosis and before diagnosis
1

Okay, from what I’ve read online, internuclear ophthalmoplegia (one-and-a-half syndrome) is a sign of lesions in the brain (unless due to trauma or stroke, which I haven’t had), and is very strongly associated with MS. I’ve had internuclear ophthalmoplegia, to my knowledge, at least from age 21, when I had my eyes tested at the doctors. No link to MS, or any kind of brain issues (lesions) were ever brought up. But now, I am enduring symptoms of MS, and the combination of symptoms and internuclear ophthalmoplegia are leading me to be almost certain that I have MS, (or at least something which really warrants being checked out), and do correct me if you think I’m wrong, but I don’t think I am being unrealistic for thinking this way.

I am just suffering with weird symptoms, found that they resemble MS, made a connection to something else I have, and am eager to get things sorted out.

And so - how important is it to get a DX quickly? How far into symptoms were you given your dx?
Can getting treatment early stall any of the symptoms / nasties?
And how have they worked for you?

Much love to you all! x

2

Sorry to be what must appear horribly negative, but there is no rush to get a diagnosis as far as meds go because there is no cure. MS is a chronic, progressive disease - once youve got it, youve gpt it. Disability can be delayed by starting on disease modifying drugs within a couple of years, but they only work for people who have relapses and they only reduce these by about 30% on average (if someone has aggressive RRMS they may be given more effective DMDs - which come with higher risks). There are fewer than 15% of MSers on DMDs in the UK. The best things a dx gets you is access to an MS nurse, meds for symptoms without so much hassle, automatic cover from The Equality Act and peace of mind in that at least you know what’s wrong. These are all very worthwhile and make pursuing a dx worth it on their own, but they don’t change the course of your MS. MS is not an emergency. It’s also not the end of the world - very few people have such a severe course of MS that their life is threatened or ruined. I guess this is why neuros don’t understand our rush to get a dx! My dx took 15 months from start to finish. I started on DMDs 5 years later, when my MS became more aggressive. They work well for me thankfully - the only period off them since resulted in lots of relapses. Btw, diagnosis does not depend on symptoms - the pattern is more important. I don’t have time to go into it right now, but if you google 2010 McDonald criteria, you will see what I mean. Hth! Karen x

3

Sorry to ditto what Karen says, but anything she says is always good advice.It really is worth looking up the McDonald criteria but make sure its the 2010 version as the rules were changed then.

I dont know anything re the eye problems,but you can bet someone on here will. A lot of us have Optic Neuritis on a regular basis (me included) so if it plays havoc with your vision then I can sympathise with that one.

My dx was quite quick in being 2 years but my access to dmd was due to two bouts of ON and then back to back relapses that I obviously didnt realise were relapses at the time.

Have you been to your gp to be referred to a neurologist or had the boat load of blood tests that need to be taken first to rule out the easily treatable things that often mimic ms. The jourey to an ms dx is very much a ruling out other things.

If you havent I would suggest a trip to the doc to start the ball rolling…dont get too bogged down by the ‘it might be ms’ as it could be a vitamin deficiency or other treatable condition giving you very real symptoms but that can be cured.

If it does prove to be ms,while its not curable it is also not life threatening it may just mean life changing in some ways.

Pip

4

Hi Shiller

Yes an INO or 1 1/2 can be associated with MS as well as stroke / trauma / tumours/ myasthenia (which can mimic almost eye kind of eye movement problem)etc. Did they do an MRI on you? Considering your age I would have thought so.

You haven’t gone into your latest symptoms but going to see your GP for some routine bloods and getting referred to the neurologist is a good idea if you want a diagnosis. Remember that though an INO can occur in MSers other things could have caused your symptoms.

It really depends on how much your getting symptoms and how badly do you want to know. As the others said getting a diagnosis whether it’s MS or not doesn’t always mean a cure. But for some it’s the peace of mind knowing what’s happening to their bodies and understanding what they can do to try not to make things any worse.

Best of Luck

Reemz

X

5

Thank you all so much.

I was taken to A+E on Friday primarily due to suicidal urges - (They didn’t exactly keep me informed whilst I was at hospital about anything at all so I didn’t really know what was going to happen: I was rushed me around various rooms, took one blood and two urine tests, asked me questions, and left me waiting around for long periods of time whilst not having the foggiest what was going on) - due to concerns about my health.

I am very, very fragile in regards to worries about my health so these recent symptoms had really thrown me off.

At hospital they tested my bloods and done 2 urine tests, and to my knowledge these all came back absolutely fine. However, they didn’t actually test me for the thing which landed me in hospital for: MS! No MRI was done, no referral to a neuro was given, and the only time MS was mentioned to me was by the psychiatric team.

I am getting home visits every day from them, who are monitoring my mental wellness, whilst I am still enduring very MS-like symptoms and seem to be getting new ones every day (today: numbness in the left side of my mouth). So I am still worried, still not on any kind of path to a DX of any kind, and so still none the wiser as to what I actually have.

I understand that there is no cure for MS, but on behalf of my fears, I would be very eager to get on the path for any kind of treatments which could help me if I do have it which could help me through.

I am slowly coming to terms with… the whateverishness it is of whatever I have. i.e. I am cooling down a lot from Friday and the care team, help from my partner and family, and you wonderful informative lot here is helping me so much. :slight_smile:

6

I really must emphasize this… I don’t mean to be a pain here, undiagnosed, all wibbley-wobbley about these symptoms that may or may not be MS… but I am truly, truly thankful to you all for helping me. xxx

7

If the psychiatric consultant posed the idea of ms and the fact you are still having daily input from them could you not say that a refferal to a neuro to give you an mri or at least do tests to rule things out would significantly improve your well being.

Anxiety may be causing your symptoms but they are symptoms all the same and the medical people need to be telling you what they are going to do about it and why isnt the psychiatric person following it up if he suggested it may be ms.

It is very common on here to have people that have presented with numerous symptoms that gps kept saying were anxiety and been fobbed off for years. You appear to have strong family support what do they think is going on and might it be helpful if one of them advocated for you in appts to say what all this is doing to you and the affect it is having on your daily living and wellbeing?

Hang in there.

Pip

8

Thank you Pip!

Apologies for the long post, you absolutely don’t have to read it of course!

The person who thinks it’s MS, is myself. I have no proof. I have had no tests. Just worry and uncertainty really.
Nobody else yet thinks that I have it.

In honesty, I just don’t know what is happening to me, but it is frightening me.

I think in times of fear and uncertainty, humans will naturally try to make sense of what is happening, jumping to conclusions, and try to pin it down to something. That something for me, has been MS. Although, it’s also been anemia, pernicious anemia, vitamin B12 deficiency, or thyroid problems. Just, with the blood test coming back normal (I asked the doc if this test would test me for anemia and he said yes), I feel as though any potential issues are down to MS and thyroid?

I am trying to play expert only because I am scared, I am trying to figure out what’s wrong with me because it feels like no other medical person really is.

I just about managed to convince the team yesterday with the help of my family, that I am experiencing very real physical symptoms (I think they really thought it was “all in my head” / anxiety on account of my medical history (I used to have depression, anxiety, and BDD)), and that getting tested for MS (/ finding out what is wrong with me), would help me significantly.

But it’s a matter of actually having these things put into motion which seem so collosall. - I would have thought that either my GP or the hospital would have organised a referral for me, but I have to go back to my GP to try to get this.
The most bizarre thing is, that upon looking for MS research / treatment places in my area this morning: there was one at the VERY SAME hospital I was taken to! >.< I just think: Why couldn’t they have just checked me over there? Gahh.

Already, having gone through my GP and a hospital, I cannot even count how many times I have had to reiterate my symptoms already to so many people, but still I am actually nowhere on the ladder at all. Because my psychological health is suffering due to all of this worry and not even knowing what is wrong with me, I just dearly hope that simply finding out what is wrong with me isn’t going to be another path full of struggle.

Ehh… though what can be done? I am hanging onto the support of those around me and am glad to have the psychiatric people to tell my worries to to take some of the pressure off of those I love.

If you made your way through this post, thank you, as ever, and I am wishing you much love and all the strength in the world. x

9

I am no expert in any area of health be that physical or mental health.

I am also the sort of person that types immediate responses from gut reaction without niceities…a spades a spade type of person. However I sense you are a vulnerable person in a scary place and you need answers.

To me it appears that the bulk of the medics you have seen do not see you as presenting with ms so its not on their radar to test for. You havent specified what your symptoms are but I believe I have seen Rizzo’s posts on here regarding symptoms and Im sure she has said a vast array of symptoms coming and going repeatedly is not a usual presentation of ms…forgive me if im wrong, so with your history of anxiety it may explain their actions.

I dont know what your relationship is like with your gp…and yes its common to be asked to go to the gp for a referral, but if you explain to him where you are at mentally with this belief of ms and the need to know one way or the other he may be able to help you.

I do have to ask though that if he does some basic neuro examinations and tells you he doesnt believe there is a neurological cause for your symptoms and you have no need to be referred what then? You are then left with how can you manage your symptoms on a daily basis and the need to explore again why they are happening.

If all this upsets you I apologise but I felt I needed to reply.

Pip

10

Thank you again Pip!

I think it’s my fault for how terrified I am, that my mental health has taken a very firm front seat over anything else: it has taken a much higher priority over the very symptoms which resulted in my mental health taking such a battering in the first place.

Friday was such a relentlessly bad day; I had to get all of these symptoms out without seeming like a hypochondriac, and then just gave in and broke down into hysterical, dizzying wailing to the point it took all the breath out of me when I handed him the list of symptoms (including feeling like I want my life to be over).
This GP was my life-long family GP (who has known me since my birth and my parents for many, many decades) outright said “You do NOT have MS!” in an almost agressively worried way… He actually seemed very ill at ease. I had cried so hard my nose started bleeding and I got the weird tingles in my hands.

I must go back to him and ask him for more help.
If he performs neuro examninations on me and explains concisely and thoroughly his assertions, can tell me what is wrong with me, and gives me advice / help / prescibes treatment / meds / whatever, that would absolutely be the best possible outcome.

11

It sounds like a very good idea to go to your known and trusted gp.

Think before you go what you want to get out of the consultation so when he says- what can I do for you or whats wrong ,as they all seem to start with you know concisely what you hope to achieve by seeing him.

Remember they are clock watching throughout so be sure of what you want him to do for you. I f you think you might forget write it down,your known gp doesnt need all the history its already there for him.

My approach is- this is where Im at, this is causing me problems ,what can you do about it? It seems to stop them switching off.

You will find a way through this.

Pip

12

Ps the weird tingles following the (to use your words ) dizzy wailing were more than likely from hyperventilating during the crying so I wouldnt worry too much about that.

Pip

13

Hi Shiller. It is very frustrating to think there is something going on within your body and that nobody is doing anything to find out what it is. I actually think it is a really good thing that you are with the mental health team and that they are keeping a close eye on you as I think you may find some of the answers with them. Could you ask them to have you assessed by a neurologist? Im not really sure how it all happens to be honest, but from your posts, I personally am more concerned with your mental health than anything physical (and no I am not a doctor or anything like that, so may be speaking totally out of turn here). Whatever is going on in your body with all the symptoms you are experiencing, you have been checked over by doctors, and found to not have anything that is really serious. Thats a really good thing, as now you can hopefully understand that whatever is going on in your body, is not endangering your life right now. So, focus on getting your mental health back on track, and then, when you are stronger, if your body is still showing symtoms, then go back to your GP and ask questions then. I wish you all the best Shiller and certainly hope I do not offend you by this post xx

14

Reading through some of the more later posts I can see you’ve been through quite a lot Shiller. I’d second what Paul has said above - concentrate if you can on getting yourself into the right frame of mind and stronger. It gives you a bit of time to assess your symptoms and if by the end things are no better or worse you’ll be in a stronger place emotionally to deal with finding out what could be wrong. You have your family, the mental health team and of course us here to turn to for support.

Stay strong

Reemz

X

15

Thank you dearly everyone, you are all so very kind. <3

I paid another visit to my GP today (significantly less upset today I am happy to say! He said it was nice to see me smile again!) and relayed all my symptoms to him again, told him how the hospital went, and asked him for some help.
We both laughed because I said “I haven’t actually asked you what YOU think I have!” I don’t think he was really sure.
I asked him if it could be thyroid problems and he said no.

I asked him if he thought it could be MS, and he said “I think it’s important to rule it out”, so… yes, very different to what he said at first (on “that” Friday!). But I do trust him. He checked my reflexes (seem okay) and my eyes.

And he said I can have the referral to a neuro!

This is exactly the outcome I was hoping for! :smiley: I am very glad that’s all sorted now. Also I wasn’t flooding his office in tears this time so I got the chance to actually speak clearly about my symptoms!

I am hoping that if I do have MS, what I am going through right now is helping to prepare me for it. I know I may not have MS, but I feel that due to the state of my mental health, I am given time to fully comprehend the possibility and get myself in the right frame of mind to be able to take a possible MS DX without falling to pieces.

Still holding on… <3

16

glad you saw your GP today and he can see the improvement in you from Friday Shiller. Good that you have a neuro referral too so that everything can be looked at. Please dont worry too much about what it may or may not be at the moment, as you need to get out and enjoy your life now. take care and let us know how you are getting on. support is always here xx

17

Onwards and upwards eh. Well done you.

You have your referral,so in the next few weeks while you are waiting for the appt you can really focus on getting the most out of the mental health teams input so that you are in the best place possible to face whatever life throws at you.

Small steps leads to big outcomes, and the support network on here Im sure will help fill many gaps.

Take care

Pip

18

Fantastic news Shiller. It really makes such a big difference when you’re actually listened too. Wishing you the best of luck.

Reemz

X

19

That’s great news. Just the fact someone is listening makes you feel so mch better Xx