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Neuro app

I have my first app tomorrow morning , iam very scared , over the years i have been ignored and fobbed off , please don t get me wrong i haven t a clue what is wrong ,all i want is for them to listen and not fob me off or explain my symptoms away like its nothing . i deal with this everyday and know something is definately wrong . as soon as things get on a even keel something else happens ,its getting harder and harder emotionally and physically to remain positive when nobody has any idea .

Please tell the neuro exactly what you have just said. And try not to worry - most neuros are absolutely fine!

Remember to take a concise list of symptoms and questions so you can tell the neuro the important info without waffling.

Good luck :slight_smile:

Karen x

hi rizzo , the problem i have is i havent a clue whats revelent and whats not ,so whenever i see doc i tell them all symptoms and they say it doesnt pin point to anything specific and its about alliminantion , i dont want the nureo to be like that ,i just want them to see what symptoms are relevent and go from there .(sorry if iam waffling ) .

OK, well I guess I would recommend telling the neuro just that! That you have been experiencing lots of different things over the years and you aren’t sure what’s important.

You could try to put similar things together so the list of symptoms isn’t too long though. For example, if you have burning in your right leg, tingling and buzzing in both legs as well as pins and needles in your left thigh, you could class them all as “strange sensations in my legs”. If the neuro wants to know more, he/she can ask.

It’s kind of late to start doing that now mind you :frowning:

If I were you, I think I would tell the neuro that you aren’t sure what’s important, but that your worst problems at the moment are…

This gives the neuro a flavour of what’s going on and might allow him to just ask you questions.

I hope it goes well. Good luck :slight_smile:

Karen x

So how did it go then?

luv POllx

I went in there with a list of symptoms ,he didnt even look at them , i was extremely nervous as i hate hospitals ,and started to cry ,as far as he is concerned nothing wrong with me except stress and anxiety . he ordered bloods and a mri or my brain and neck which i am having on saturday afternoon and i will see him in 6 months . his words were iam 100% postive whatever you have is not neurological .

I feel back to square one .

I would like to thank everyone for listening to me and giving me advice since i came on here ,you all have been invaluable .and i would like to wish the best of health to you all . xx

I went in there with a list of symptoms ,he didnt even look at them , i was extremely nervous as i hate hospitals ,and started to cry ,as far as he is concerned nothing wrong with me except stress and anxiety . he ordered bloods and a mri or my brain and neck which i am having on saturday afternoon and i will see him in 6 months . his words were iam 100% postive whatever you have is not neurological .

I feel back to square one .

I would like to thank everyone for listening to me and giving me advice since i came on here ,you all have been invaluable .and i would like to wish the best of health to you all . xx

Poor you. Its so hard to keep it together when you’re so nervous, and almost setting yourself up for dissapointment, but despite what he said, he can’t be ‘100%’ sure what you have isn’t neurological as yet, as he has at least ordered a scan, and soon! Please don’t feel too dispondent just yet, and don’t forget, you can ask for a copy of the scan at the hospital, although most places charge for it, and you may not have to wait till your next appointment with him to get the results, your GP may be able to tell you, or you can ring the neuro’s secretary and ask! Not back to sqaure one just yet.

Basically i went in there with the list ,he was so dismissive and didnt even look at it, he left it where i put it . i think i cried because i knew i wouldnt get a diagnoses or anything but id built myself up to be able to deal with this app ,(like what i was going to say and explain what points ) ,he was even dismissive about other problems i have which i have had for years , i knew from then that he had made his mind up and that was before he even examined me , as far as he is concerned the mri is so that he can show me there is nothing wrong . (his words ).

I have had stress and anxiety for years and have delt the best way i can but the symptoms i have suffered last 4-6 months have not even been similar to the symptoms i have got .

sorry i forgot to put he is going to send me the results as soon as he gets them .so i won t have to wait to see him .

Hi Destiny

My neuro did exactly the same thing to me, told me it was anxiety and that there was no progressive MS there or anything similar BEFORE he had even examined me! I went along with it all for a time, went to see a neuropsychologist at his request and of course the psychiatrists report stated quite clearly that I was a stable intelligent individual with no signs of anxiety or other personality disorder. Then I pressed on; it’s hard, the frustration made me cry when in there and I forgot everything I meant to say. Then he said it was cerebral palsy and then he said it was something else, can’t even remember what but eventually he started to listen, particulary when I described my last major collapse at Christmas and how I have become bowel incontinent.

I’m still not diagnosed but am not giving up and am waiting now for my next neuro appointment.

Don’t depair, you know there is something wrong, I have found that you have to be assertive with all these medical professionals and this is so hard to do. I have nearly been killed whilst crossing the road 3 times due to spatial awareness difficulties and if I had been killed or injured the medical people would have been to blame for not telling me what I am dealing with and how to manage it and so I will not give up trying to find out, it’s that important. Keep smiling Dianne x

[quote=“destiny101”]

Basically i went in there with the list ,he was so dismissive and didnt even look at it, he left it where i put it . i think i cried because i knew i wouldnt get a diagnoses or anything but id built myself up to be able to deal with this app ,(like what i was going to say and explain what points ) ,he was even dismissive about other problems i have which i have had for years , i knew from then that he had made his mind up and that was before he even examined me , as far as he is concerned the mri is so that he can show me there is nothing wrong . (his words ).

I have had stress and anxiety for years and have delt the best way i can but the symptoms i have suffered last 4-6 months have not even been similar to the symptoms i have got .

[/quote] Really feel for you, I’ve been waiting ages and have not got an apt for months- however my neuro is lovely and really puts you at ease. Is there any way you can see someone else- maybe at a different hospital?

I’m new to all this so sorry if I have said something wrong

Hi Destiny

Hugs my lovely - its horrible when the neuro is dissmissive.

My first neuro (MS specialist) was terrible and told me to get on with it. Most of my neuro exam bar reduced pin prick sensation is normal, I had insufficient vit D but other normal blood tests and two stable MRI’s with non-specific brain lesions (?normal). He was so unhelpful with my symptoms I sought a second opinion with a general neuro at another hospital.

He mumbled anxiety when I told him about my bowel, then said I think all your findings are going to be normal (I felt like crying but didn’t). To cut a long story short his neuro exam was almost normal as the previous neuro’s reduced sensation. He then asked where I wanted to be seen. I asked him well okay my MRI’s normal, the neuro exam is normal. What is this - what do you think? To my suprise he said its sounding like MS but we can’t just diagnose if the MRI isn’t showing anything. We have to be careful not to just give you that label. But your symptoms aren’t anxiety or stress related - you seem like a happy person. He has now referred me to an MS specialist - so fingers crossed I have luck there too.

I guess what I’m trying to say is you do have to be assertive but not pushy (if I’d said so is this MS I might have got a different response). Its horrible as you feel nervous and on edge and like crying - I did it the GP office but I guess sometimes thats read into as being anxious or depressed when its not its a person at the end of their tether wanting answers. Is there anyway you can take somone with you for support next time so you feel more confident? You may still come up against a brick wall, neuros are notoriously difficult it seems - I work for the NHS and am appalled by what so many of us have to endure.

The good thing is you are getting an MRI so thats a good start. Wait till you ge the results back. If something shows you can wipe that smug smile off his face if it doesn’t I guess you could go for another opinion or try to be more assertive at the next review. Are you on meds for anxiety or depression - if so you could say I have been on meds for anxiety and depression for …long they have helped with x/y/z but I still have … issues. So why am I getting these issues what else could be causing these then?

Are you getting any help with your symptoms - how good is your GP?

Whatever happens don’t give up. You know when there’s something wrong with your body - regardless of whether it is MS or not someone needs to listen and get to the bottom of this.

Big hugs

Reemz

X

Hi reemz

his point of view on the mri is to put my mind at ease , i have had more bloods done although doc done loads and only found me deficint in vitd3 , yes iam on citalopram for anxiety and depression which i have had for over 20 years , my symptoms have been on and off over the years ,but its only the last 4-6 months that different symptoms have been present like walking like iam in mud,knocking into things,loosing my balance , like electric shocks through my arms and legs , tremors and body jerking ive never been happier in my life iam even studying and so for this to be anxiety and brand new symptoms at that is hard to believe , my doc is understanding and she thought it could be nurelogical so now i have absolutely no idea .

Hi Destiny

this is what you need to tell the neuro. Maybe something like ‘I like yourself thought my symptoms may have have been related to my previous anxiety/depression though I have to say I’ve never felt more happier and content with my life aside from what I’m experiencing at the moment.’ I spoke to the GP and even with adjustment of my meds these symptoms seem different and not like what I had when I did orginally got diagnosed with anxiety. My GP referred me because after going back and forth he really didn’t feel it was anxiety. So what else do you think this could be?’

You’re acknowledging that neuro symptoms can happen with anxiety, you’re even saying you contemplated it which I think is a good thing. I work in the NHS and if a patient turned round and said to me well I know I’ve had anxiety issues so I didn’t jump the gun and tried to see if that would solve my symptoms but it hasn’t it would make me think again.

But most importantly don’t let them fob you off . I know the neuro hasn’t requested the MRI to help you he’s done it so he can send you away. Nonetheless if there is something obvious wrong it will show so it is good you’re having it done.

I’m pleased your GP is on side. Make sure you get copies of your MRI and if this neuro isn’t going to listen I would speak to your GP after your MRI and results and think about whether you go for a second opinion.

Good luck Destiny. Limbo is a difficult place to be.

Reemz

X

It may not have gone well, but you ARE getting the MRIs, which is what would have happened if he’d thought it was neurological plus he said he’d see you again. This again is a good outcome. Reemz is completely correct in that to get the most out of consultants, we have to be assertive. Like asking the neuro to read the list if you see he hasn’t - this is why it’s best to talk through it rather than hand it over :frowning: Still, you’re getting the MRI - the neuro may change his tune when he sees the results - you never know! Karen x

I am so sorry to hear about your problems. I can really sympathise. My MRI came back clear as did my lumber puncture but I have paralysis of the optical nerve and my bloods have come back with high white blood cell counts. I am a very positive person who strives under stress, so like you I am at a happy point in my life. Fortunately, I dont suffer with anxiety but did have a panic attact in my last appointment after 8 months of feeling so ill with very similar symptoms to yours. ( but who wouldn’t so don’t be hard on yourself for crying)… So I was sent off to Mental Health. I was also given anti depressants both for the tremors and because of the panic attack but they have really bought me down and I spent 3 days crying which is very unlike me. I have an appointment with my GP as I have read on the forum that some anti depressants aggravate MS symptoms. Before these I was on Beta blockers which worked well for the tremors but didn’t bring down my mood. I will let you know what she says. Big hugs Kirstie xx Hugs Kirstie x

Hi, I saw my GP and she said that if the anti depressants are bringing me down, that I could stop taking them and just have them in reserve. So back on the Beta blockers and feeling in much better spirits. Xx