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I was not ready for this

Today (well, yesterday now) I had my first neuro appointment after first going to see my GP 6 weeks ago with numb left half of my body and extreme weakness along with various other MS-like symptoms (double vision etc). I was sent for a CT scan which was clear so no brain tumour or stroke. I was then referred to a neuro as an emergency and have an appointrment for an MRI next month. After joining this forum for some advice/knowledge etc I thought that a first neuro appointment would be just one small step to finding out what is causing all these horrible symptoms.

So I went in with one A4 sheet of paper with my symptoms, when they started, how long they lasted and what symptoms I now have left. She did various tests, Babinski's reflex, Romberg test etc. I couldn't walk in  a line toe-to-heel one foot in front of the other, lost my balance numberous times. She asked me about any other episodes like this. I said about the time the left half of my head went numb when having a filling but dentist said trapped nerve. She asked me how long it lasted and I said about 2 months. She nodded. I then mentioned that I had two severe bouts of Labyrinthitis about 2 years ago and she was very interested in this and asked details. She then asked if I had any questions. I told her that my GP had mentioned MS and was almost bowled over when she agreed! She said the Labyrinthitis was probably actually 2 MS attacks and probably the trapped nerve on having a filling. I then remembered having a weird skin infection when I had about 14 marble-sized lumps in my left armpit. She said it all ties in with lymph glands and imflammation of the nerves etc. She said that the MRI I have next moth will confirm MS! She hasn't ruled out anything else though?? I was only in her office for about ten/fifteen minutes.

When I mentioned MS I fully expected her to say something like "Oh no, nothing that serious!" She has made me an appointment to see her end of May (MRI is 18th May) and she said we can discuss results then and also treatment options! She sounded pretty sure. Why would  a neuro scare someone like that if they weren't pretty convinced? But how does she know it isn't something that presents as MS? There are loads of symptoms that cause paresthesis and other MS-like symptoms.

I got outside and burst into tears!

All I can thuink about now is me being in a wheelchair and my children having to care for me instead of me caring for them!

I just was not ready for this in a milllion years. Everyone here seems to wait years for a DX and get told all sorts of different things and have all sorts of endless tests. I was really prepared to be going down that route of multiple tests and never-ending waits etc.

She did say that because I am recovering from this attack myself it is a good sign. A good sign of what?

What type of MS might I have? How will I find out ? I was too stunned to ask these questions at the time.

Gobsmacked much!

:'(

 

Hi there,

Sorry for the strange timing of post. Couldn’t sleep - again!

Although the consultant has agreed that MS is a plausible explanation for your symptoms (after you suggested it), I think it’s still too early to jump to conclusions, and you are a long way from formal diagnosis.

Plus a couple of things don’t quite fit. I’ve NEVER heard of MS causing lumps in the armpit - or anywhere! Yes, it’s an inflammatory disease, but inflammation of a very specific kind - the central nervous system. NOT of the lymph nodes, or anything else that can be seen/felt externally. So I really don’t understand why she’s suggesting that supports the MS theory.

I’m also a little bit confused about the dental filling thing. She’s now saying this was an undiagnosed MS attack, or that it was a “trapped nerve” relating to the work?

How does she know it isn’t something else that presents as MS? Put simply, she DOESN’T. You will still need loads of tests.

She may simply be working on statistical probability. MS is the commonest disabling neurological condition in young adults, so if she had to bet on this, or “something rarer”, she’s not going to go for the “something rarer”. But inevitably, some patients do have a less common explanation for things. The most frequent explanation isn’t necessarily the right one in every case. Even if the MRI confirms something suspicious, you will still need blood tests to rule out alternative causes.

Most neuros also like the reassurance of a lumbar puncture, too, although it’s not strictly essential for diagnosis (I’ve been diagnosed without one).

Finally, if it DID end up being MS (and I believe you’re still some way from that conclusion), it’s important to know that not everyone with MS ends up in a wheelchair soon - OR AT ALL. The chances are, you have passed someone in the street with MS, and not even known there was anything wrong with them. They might not have been in a wheelchair. They might not even have been using a stick. It’s a hugely variable condition. Unfortunately, the inability to predict how it’s going to go, or in what timescale, is one of the scarier things people have to adapt to. But for most people, it brings extra challenges, but NOT instant helplessness.

It would be very rare to get all of the bad things you might read about, and certainly all in one go!

Try to deal with problems as they arise, and not dwell on ones that haven’t happened yet, and perhaps never will.

Complete or very good recovery from early attacks is no guarantee, but tends to be associated with better long-term prognosis. If there’s poor recovery right from the start, the outlook tends not to be so favourable - but again, nothing’s set in stone. People have improved or plateaued, even from attacks that seemed to last a very long time.

Tina

Hi there,

Sorry for the strange timing of post. Couldn’t sleep - again!

Although the consultant has agreed that MS is a plausible explanation for your symptoms (after you suggested it), I think it’s still too early to jump to conclusions, and you are a long way from formal diagnosis.

Plus a couple of things don’t quite fit. I’ve NEVER heard of MS causing lumps in the armpit - or anywhere! Yes, it’s an inflammatory disease, but inflammation of a very specific kind - the central nervous system. NOT of the lymph nodes, or anything else that can be seen/felt externally. So I really don’t understand why she’s suggesting that supports the MS theory.

I’m also a little bit confused about the dental filling thing. She’s now saying this was an undiagnosed MS attack, or that it was a “trapped nerve” relating to the work?

How does she know it isn’t something else that presents as MS? Put simply, she DOESN’T. You will still need loads of tests.

She may simply be working on statistical probability. MS is the commonest disabling neurological condition in young adults, so if she had to bet on this, or “something rarer”, she’s not going to go for the “something rarer”. But inevitably, some patients do have a less common explanation for things. The most frequent explanation isn’t necessarily the right one in every case. Even if the MRI confirms something suspicious, you will still need blood tests to rule out alternative causes.

Most neuros also like the reassurance of a lumbar puncture, too, although it’s not strictly essential for diagnosis (I’ve been diagnosed without one).

Finally, if it DID end up being MS (and I believe you’re still some way from that conclusion), it’s important to know that not everyone with MS ends up in a wheelchair soon - OR AT ALL. The chances are, you have passed someone in the street with MS, and not even known there was anything wrong with them. They might not have been in a wheelchair. They might not even have been using a stick. It’s a hugely variable condition. Unfortunately, the inability to predict how it’s going to go, or in what timescale, is one of the scarier things people have to adapt to. But for most people, it brings extra challenges, but NOT instant helplessness.

It would be very rare to get all of the bad things you might read about, and certainly all in one go!

Try to deal with problems as they arise, and not dwell on ones that haven’t happened yet, and perhaps never will.

Complete or very good recovery from early attacks is no guarantee, but tends to be associated with better long-term prognosis. If there’s poor recovery right from the start, the outlook tends not to be so favourable - but again, nothing’s set in stone. People have improved or plateaued, even from attacks that seemed to last a very long time.

Tina

Hi there,

Sorry for the strange timing of post. Couldn’t sleep - again!

Although the consultant has agreed that MS is a plausible explanation for your symptoms (after you suggested it), I think it’s still too early to jump to conclusions, and you are a long way from formal diagnosis.

Plus a couple of things don’t quite fit. I’ve NEVER heard of MS causing lumps in the armpit - or anywhere! Yes, it’s an inflammatory disease, but inflammation of a very specific kind - the central nervous system. NOT of the lymph nodes, or anything else that can be seen/felt externally. So I really don’t understand why she’s suggesting that supports the MS theory.

I’m also a little bit confused about the dental filling thing. She’s now saying this was an undiagnosed MS attack, or that it was a “trapped nerve” relating to the work?

How does she know it isn’t something else that presents as MS? Put simply, she DOESN’T. You will still need loads of tests.

She may simply be working on statistical probability. MS is the commonest disabling neurological condition in young adults, so if she had to bet on this, or “something rarer”, she’s not going to go for the “something rarer”. But inevitably, some patients do have a less common explanation for things. The most frequent explanation isn’t necessarily the right one in every case. Even if the MRI confirms something suspicious, you will still need blood tests to rule out alternative causes.

Most neuros also like the reassurance of a lumbar puncture, too, although it’s not strictly essential for diagnosis (I’ve been diagnosed without one).

Finally, if it DID end up being MS (and I believe you’re still some way from that conclusion), it’s important to know that not everyone with MS ends up in a wheelchair soon - OR AT ALL. The chances are, you have passed someone in the street with MS, and not even known there was anything wrong with them. They might not have been in a wheelchair. They might not even have been using a stick. It’s a hugely variable condition. Unfortunately, the inability to predict how it’s going to go, or in what timescale, is one of the scarier things people have to adapt to. But for most people, it brings extra challenges, but NOT instant helplessness.

It would be very rare to get all of the bad things you might read about, and certainly all in one go!

Try to deal with problems as they arise, and not dwell on ones that haven’t happened yet, and perhaps never will.

Complete or very good recovery from early attacks is no guarantee, but tends to be associated with better long-term prognosis. If there’s poor recovery right from the start, the outlook tends not to be so favourable - but again, nothing’s set in stone. People have improved or plateaued, even from attacks that seemed to last a very long time.

Tina

Oh, sorry - I didn’t mean to post it three times. Having connectivity problems here. :frowning:

I am sorry you have had this shock to the system.  I think most of us who have had an MS DX have a personal memory of an ['oh, filtered word'] moment when it dawns on us that MS is a real possibility.  Whether the news is broken gently or rather brutally, the impact is probably about the same.  And it's not funny, I know.  It's been well over a decade now for me, but I can remember it as clearly as if it was yesterday.

You dont have a DX yet, and, as the neuro said, and (as you also said) there are other things to rule out, so try to pace yourself and don't assume the worst (and remember that 'the worst' has already been eliminated - you don't have a brain tumour.)  But if it turns out that you do have MS, you have already had one of the really big jolts - the sudden shock of hearing that it's a prime suspect - so at least you've got that under your belt now.

There are many of us on here who had just the same thoughts about disability and lives falling apart, but have found that we have been able to make a good life for outselves with MS, and that our worst fears have not come to pass.  And if some bad things have happened, we have found ourselves better able to cope than we had feared.  If you do get a DX in the end, please hold onto that thought.  It really is not the end of the world.  It's [filtered word] bad, bad news, no two ways about it, but the sun continues to rise and set. 

When your neuro talked about recovery, she might have meant that you recover well from relapses (i.e. not too muc residual damage left behind) which tends to be a good sign for people who have relapsing/remitting MS (which might well be the kind of MS she is thinking of).  That's good news.  If you do want to find out a bit more, I would strongly recmomend the information on the main part of this MS Soc site.  It's reliable and clear and sensible.

You've had a bad shock, and please do not worry if you feel rather bruised and fearful and emotionally up and down.  That's normal, and you will get through this and find calm again.  Hang on in there.

Alison

x

HI, I'm so glad to read these posts as I am in exactly the same position.  I had a neuro appt last Thurs.  Actually I thought that she was going to tell me I was fine as my symptoms barely bear mentioning, numbness in right thigh, tingling toes, I went to the doctor becuase I thought it was my back and I wanted to see if I could get some physio.  Anyway, it turns out that tingling in both feet can't be mechanical, blood tests for vitamins and diabetes etc were clear.  The neurologist aske me how I felt and I said fine.  Well she said, your symptoms have to have a neurological cause and everything neurological is MS unless proved otherwise.  So, she said, you have MS so what, I'm not worried about you.  I think you will understand that having gone there completely unprepared I was gobsmacked.  Just like you all I can think about is my 5 year old daughter (I'm a single mum).  I can't stop crying and the stress has brought on numbness and tingling in my face.  I can't believe that symptoms so mild can have such a massive diagnosis.  I am waiting for MRI, lumber puncture and nerve tests and apparantly this will take time, it will be 4 months before I see the neurologist again.  I tried to carry on at work but I've collapsed in a heap now and taken today and tomorrow off.  I feel ridiculous, everything and nothing has changed.  There's nothing wrong with me really and yet wallop.  Anyway, much good wishes to you, I hope we both turn out to be on the luckier side xx

To both midnghtmoon and seaside belle you have both had massive shocks but Im not up to typing today,just wanted to say im thinking of you both.

Pip

Sorry you are having such a rough time too, Seaside Belle. You put it so well when you say that everything and nothing has changed - it just makes it all the more difficult to explain to people who have not been there how things are for you. It is all very disorientating. Don’t feel ridiculous. There is no ‘good’ way to react to shocking news - all you can do is grind your way through the painful feelings, I think. But you will come out the other side.

Alison

x

Some brilliant replies already so I just wanted to add GRRRR! to neurologists who just don't understand the difference between their understanding of MS and what a patient is thinking and feeling when they hear "multiple sclerosis" for the first time!

The thing is, neuros mostly think that MS is one of the better diagnoses. And while it does bring us challenges that we'd rather do without, for the vast majority of people, they're right! MS really is not the end of the world!

You've had replies from people at different stages of life post-MS. Alison and I are a fair way along and our lives are still GOOD!

I was diagnosed in 1998. I was still competing in international martial arts competitions in 2010! So, yes, MS will probably mean changes, that your life will take a different path than you expected, but it absolutely does not mean that it is over or that it is going to be bad.

Try and have faith. Things will be OK.

Karen x

Hi and thanks for your replies.

I needed a day off from MS talk yesterday. I didn't want to hear, read or talk about anything MS related at all.

I don't know what she meant by the skin infections and lymph glands etc. I didn't really ask many questions as I was just feeling a bit out of my depth and overwhlemed with information and questions etc. I wonder if she meant a lowered resistence to infection due to immune system not working at optimum level? I don't know, just guessing.

It all felt a bit surreal at the time. Afterwards I had loads of questions ...once I was back home.

I may have understood her wong but I thought she was saying that the trapped nerve from the dental filling may not have been a trapped nerve but part of MS.

Thanks Alison. It is a lot to take in. I am not usually one to mope around though. I tend to get it all out at once, deal with it, then move on as best I can. Was feeling rather sorry for myself and moaning about no one else in my family ever getting anything wrong with them etc but I have had weird illnesses all my life. I am thinking 'why me?' ..and all the usual rubbish your brain tells you to feel. Not that I am wishing it on anyone else but just..'why me?' You know? I went through the whole 'What have I done so wrong?' moment as well so I was on a  real downer. Today is another day and I feel like I can deal with the next step now when it comes.

 

Fingers crossed for us both Seaside Belle. It is an awful shock and then you just get told to go away and deal with it, basically. I have to wait nearly a month now having had that shocker blow dealt to me. I am also a single mum of two boys, one with ADHD. I have no family nearby either. I am really basically on my todd and it's damn scary!

 

Rizzo, that's very reassuring, thank you :) I am inpressed you were still doing competing in national martial artscompetitions in 2010! Awesome!