How can the experts be sure?

[veebee]

Hi

Sorry for yet another post - am really panicking tonight and its getting out of control.

I have been told by my neurologist that he doesn't think I have a progressive illness. I have been told by my GP that he thinks I have anxiety, rather than MS.

Yet I still continue to believe that I may have MS, and no-one can see it. I have the odd (anxiety?) symptom and today's (sensitised feeling in backs of both legs) has been worrying me a lot.

Would the specialists be so dismissive if they thought there was even a chance? No one has really been that bothered by what I have told them - but how can all this stuff be going on and no-one seems worried by it except me?

I am waiting on an MRI scan (my neurologist has said he is only scheduling it 'for my peace of mind').

Why can't I accept what they tell me?

[countrygirl]

Hopefully your mri scan will show nothing.

ms is very difficult to diagnose if its not one of the classic manifestations wehre you have lesions in certain areas of your brain and motor function loss.

I have had 27 yrs of weird sensory/pain symptoms with hundreds of medical tests never giving a diagnosis so constantly feel a fraud. I had mri 7 yrs ago that was abnormal( don't panic , I bet yours is normal) and was told that the lesions were not in classic ms places so just wait and see - if I developed classic ms symptom like optical neuritis in next 3-5 yrs they would diagnose me with ms. Nothing changed - I still only have sensory pain symptoms and no loss of motor function at all. Second mri three years later showed no worsening of lesions so still in limbo land.

Back to neuro last week who says probably mild ms!!!!!!!! they now think that you can get a mild form that only gives you sensory symptoms and no motor impairment so having another mri in three weeks to if lesions have worsened.

YOu can see how difficutl it is to get a diagnosis even with an abnormal mri!

Trouble is that anxiety can cause exactly same symptoms so if your mri is clear then odds are that your symptoms are anxiety - which I really hope is what happens.

Good luck with the mri being clear.

[Cathy V]

Hi veebee,
Sorry you're not feeling so great tonight. In answer to your question, not believing what the docs say is part of our anxiety...we always think theyve missed something don't we? I would have thought a neurologist sees the symptoms of MS alot in his job so if he doesn't think its likely to be MS then he's probably right. The muscle twitching can def be a sympton of anxiety, i had a really bad twitch in one of my eyes that went on for months last year and like you, taking beta blockers has made it go away.

My brother has a progressive neurological condition thats part of the same family as MS and from what youve described so far it doesn't sound like it to me to be honest. He had an mri scan and a lumbar puncture to diagnose it, so as your doc said go ahead with the mri for your own peace of mind.
Hope this helps a little

Cathy

[veebee]

Hi Country Girl/Cathy

Thanks for your replies.

Country Girl, I didn't know that there was such a thing as mild MS....do you think I should contact my neuro and ask him about this?? I always thought MS arrived with a bang. but surely neuros must get people going to them all the time with sensory stuff, how come they dismiss it so easily?

Cathy, you have said exactly same as my friends - neuro sees a lot of people with MS so he should know. Its just so hard to accept it - I always want to believe the worst.

thanks again

[kellie]

hiya veebee. hugs for you hun i understand how scared you feel only mine is about cancer. no matter how many test ive had its still there in my head. but the anx is great at putting doubt there and makeing us think the worse. its like a nasty little gremlin who is always going " you know you have it dont you you are getting all the symptoms the doc just aint listening right and are missing things in your scans and xrays" he will also say to me " they got ur test mixed up with someone elses and just blameing things on me ( the anxiety)" i bloody hate it dont get me wrong i now have lots of good days but when it gets in my head it is hard to shake again. try to have faith in your doctors, anx can cause the strangest sensations that i never knew you could feel.
take care

kellie.xxxxxxxxxxxxxxxxxxxxx

[chalky]

Hi Veebee,

This is where you have to do the hard work!!
Our anxious minds follow well-trodden paths.For example,when I stopped drinking,I heard this saying in AA:-"Stinking thinking gets you drinking."
What that means for me is that I have to do certain things to avoid big trouble.When I felt anger,resentment,self pity,rage...etc,etc,I drank.I had to change my thinking,to cope with this.
It is the same principle for Anxiety.
Here's another take on your Neurologist:-
How many years of training has he had?
How many patients has he successfully treated?
Would he have a job if he wasn't competent?
The problem isn't him.
The problem is that your mind is automatically sceptical-just like the rest of us.We have to give ourselves time to change and to learn to challenge the scepticism.
We have to learn to distract ourselves when the Anxioous thinking comes calling.The more we persist at this,the easier it becomes.
Keep believing in yourself.

Best wishes,
Chalky
H

[fairyloveheart]

Hi Veebee
I have exactly the same trouble trying to believe the neuro and the ENT consultant I have seen who have found no obvious cause for my facial pain and pressure I have had since Dec 07. It's so hard. Chalky is right with his points about how long they've worked there etc etc, and if there were complaints about their competence, it would be splashed all over the press etc - and it rarely is...
In a way, it's like we want them to find something - not something serious - but something we can put a name to, they can give us some pills and we will feel better..... if only it worked like that xxxxxxx Keep your chin up. I bet your MRI will find nothing.... xxxxxxxxx

[veebee]

Chalky, Kellie and Fairyloveheart - thanks a million for your replies. You've all given me the boost I really needed today.

thanks!!!

[itoldyouiwasill]

As has been mentioned the struggle we have with accepting the benign diagnosis is all part of the cycle.

I think that much of the problem here resides with the GP's total inability to explain what anxiety is and how it actually effects our Central Nervous System....when we here the 'just anxiety' explanation we feel we are being blown off and are left wondering how a mental condition like anxiety can cause such weird and bizzare neurological sensations.

The bottom line is that prolonged anxiety will cause damage to your CNS, that is why the sensations of MS and anxiety are so similar....they are acting on the same thing, the good news is though that the damage that anxiety does is totally reversible and if you relax and allow your body and mind the time (and it can be a long time) to recover then all will come right.

Even when we consider this and become aware of the physical sensations that anxiety has caused to happen we always have the nagging doubt that we have an underlying serious organic illness....the funny thing is that this just reinforces the anxiety diagnosis as it is this catastrophic and negative though process that causes the problems in the first place.

It is hard to accept the anxiety diagnosis and I struggle and doubt everyday but this is what keeps you in the loop and it is like pouring petrol/gas on a fire....the only way to move forward is to accept the diagnosis, take a leap of faith, find a strength of your nature and as Claire Weekes says 'float' through it....no timescales, no questions and no doubts, accept it for what it is and it's stay will be far shorter.