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still crying almost 4 hours after neuro appt.

Hi everyone, I was going to reply on my original thread as to how it went but decided to create a new post in the hope more people see it and I can get some advice.
I went to see the neuro today at 9am, I walked in, sat down and he said that the mri of brain/c-spine was normal therefore he believes all of my symptoms are psychological (I haven’t had any more tests other than mri, no vep, no lumbar puncture, no bloods other than over 2 yrs ago)
I questioned him straight away as on my last appt he found clonus bilaterally and an upgoing right plantar! He said that maybe that’s normal for me, everyone is different? (Is this even correct?)
He reluctantly examined me again and said other than brisk reflexes my clinical results were fine!! (So how can they have only been detected last time if it was ‘normal’ for me but now they’re gone??)
Also my feet were under a sink, he couldn’t do the test properly, he was acting like he couldn’t be bothered!
He then sat me down and asked about my recent symptoms to which I explained I was having massive problems with my concentration, with my hands going dead at night and my hands and feet, muscle and joint pain, spasms, cramps and fasciculations to which he then said would be down to my medication, I am on citalopram for depression and amitritptyline for nerve pain, he said he wanted me off all medication (I have been on citalopram for 6 yrs and am not happy he now see’s fit to manage my depression) and the amitriptyline is only thing that helps me get to sleep at nights but now he is saying I’m on too many drugs and by weaning off them all of my symptoms will get better.
He then asked about my family history and I explained my dad had a stroke and was paralysed down his left siide which he wrote in my notes, then I explained that I have 2 aunts (mums sisters) that have MS to which he replied, you do not have MS! (How can he know without running any tests? Can he tell me I definitely do or don’t have something without investigations first?
He said my problems probably weren’t neurological??? Although on 29th March he stated in his letter than he was looking for demyelination and had clinical symptoms, now he is saying my clinical symptoms didn’t mean anything???
I left in floods of tears and phoned my gp straight away and managed to get an emergency appt at 11am! I went in and explained what had happened and he was disgusted, he said he is no neurologist but I do have neurological symptoms and they should be investigating! He was also confused at how the neuro was so adamant there and then that I did not have ms!
He also said that he would not alter my citalopram as I obviously am not in a good place just now but he would take his advice and wean me off the amitryptiline!
So now I have no muscle relaxants as I so desperately wanted and needed and now nothing for nerve pain either as it is all in my head!
Please help me, I am in a very bad place now! What can I do?? I know it is possible for pain to occur psychologically but is it possible for muscle fascicualtions to be visible in feet and calfs? Is it possible to supper spasms psychologically? Can these muscles move if it is all in my head?

That was meant to say suffer!

So sorry you've had such a bad experience letdown

 

Even if the neuro is right that it isn't MS, I'm not convinced about the clinical exam results argument. Different neuros and the same neuro at different times can get different results from the same patient, but clonus is not something that neuros could have got wrong (I don't think!) and I can't see how it could be normal. It certainly sounds like you need to get a second opinion - it's great that your GP is supportive; I'm sure he'll sort it for you asap.

 

Amitriptyline can cause loads of side effects (see http://www.drugs.com/sfx/amitriptyline-side-effects.html) so it could be adding to your problems. I think I would come off it and see what happens if I were you. If things improve, then great. If they don't, then you've proven your neuro wrong on that count at least.

 

As far as psychological causes of symptoms goes, yes, the brain can create pretty much any symptom it likes without there being any actual damage to the nervous system. A great website that explains all this is http://www.neurosymptoms.org.  One of the key things explained on this site is that patients aren't "making it up"; they are experiencing very real symptoms.

 

Let's hope that your second opinion is very much better than the first, and that the appointment is very soon.

Karen x

Hi mrsgreen

Do not fret. Please go back and insist on lumber puncture and MRI brain scan. I had these and it gave a difinative answer, not what I wanted, but
What I got. I have no doubt that you will get a result, but I have been in the place where I was " making it up" /there is no thing wrong. Go with your belief, you know you best.

Mike

really sorry your appointment/neurologist was so disappointing for you. Are you due to go back to see him again? If so my suggestion would be to come off amitryptiline and report any changes to him. I cant really offer you any advice as I havent seen a neurologist yet, but I can offer you support. Please dont feel too down about all this. Your GP sounds great and maybe you need to go elsewhere for another referral. From what I have read on here, some people can see different neuros and get an explanation of their symptoms.

I really hope it all works out for you xx

Hello Mrs Green

I'm so sorry you had a bad experience with the neurologist. I can sympathise my neuro was very dissmisive and said something obviously had happened but because I was stressed I was making it worse even though my partner who was there told the neurologist I'm a normal rational person and yes I was worried when symptoms started but not by an abnormal amount. He then at the next appointment said I'd had spinal inflammation but to just ignore everything and get on with it.

I'm not discounting that stress and anxiety can cause all kinds of weird and wonderful things but clonus is not something you can just put on. Also if you are a rational happy with it person I think you know yourself.

You have a few options here.

1. Get a second opinion - you're entitled to this.

2. Stick with what this neuro has told you come off the amytripline and if things don't improve or get worse go back and tell him I did what you told me and I'm no better..

3. Complain through PALS - which I'd probably be hesitant to do as it's his medical opinion (though I can't see how he can 100% say no MS). You can complain about his attitude towards you. Depends on whether you want to continue seeing this neuro in the future or not.

Big hug Mrs Green I really feel for you. You'll get through this.

Reemz

X

 

Thanks for replying. I am coming off the amitriptyline. Reducing today by 10mg and decreasin 10mg a week so will only take 5 weeks until I have weaned off it. He said I shouldn’t be on citalopram and amitrityline together yet when I initially saw him on 29th March he said it was fine and I could increase my dose up to 100mg!
It’s as if he believed me before I had my mri but because it was normal he now thinks it’s all psychological or down to my medication! I just don’t get it, he was brilliant when I saw him in March! My GP said maybe it’s his time of the month or he got up out wrong side of the bed as my GP even said himself he had changed his tune based on the mri being normal alone. :confused:

No, an upgoing right plantar reflex is not normal. It's usually a sign there is damage in the corticospinal tract. Clonus can be normal and is usually only found in one ankle or knee. In my early days  If you have what is called sustained clonus which I have now, which is five or more beats this is classed as abnormal. Fasiculations can be normal but can also point to a neurological condition.

 Ive had a couple of neuro exams where they've checked for a babinski sign with my socks on. If a med student did that in an exam they would fail. Different neuro's find different things and interpret them differently. The best neuro exam I ever had was by an MS specialist.

I had to strip down to my underwear and he found all sorts that my previous neuro didn't.

When there's a normal MRI you do seem to get pushed away. As I've said before he hasn't suggested VEP's either. It may not be MS but there are countless other things it could be.before he disgnoses it as functional.

I know it's frustrating. You sound as though you have a good GP. Maybe they can suggest a second opinion.

Jacqui x

Sorry you had such an awful appointment . I think Poll would say he is a numpty! Let’s hope you can get another referral to see a new neuro.

Just take it day-by-day. You will get through!

Teresa xx

Has he or anyone tested you for other things? Cause it might not be MS, even though likely from your Hx but it could be anything that mimics it? such as huges syndrome or other treatable diseases maybe with a bit of luck!