Please can you help me with neuro appointment.
Posted: Mon Sep 03, 2007 12:55 am
Hi there - I am fairly new to this board but would really like some advice on dealing with my neuro appointment next week. I apologise in advance for how long this is but if anyone could give me a bit of guidance I would be very grateful.
I am in the UK and will only have about 15 mins in my first consultation back in the NHS next week... so I am desperately keen to not leave his office with the same situation that has happened to me in the past.
20 years ago (age 15) I started to have a numb patch in one thigh. My GP at the time told my mother that I had MS or a brain tumour…. I go and see the neuro at that point and after 2 or 3 appointments – no MRI, no LP, no EVP – and they told me that I did not have MS just trapped nerves. The numbness never goes away over the years slowly spreads over the thigh area When this happens in the other leg 10 years ago I am sent back to a different neuro – again am told to my face that it isn’t MS but meralgia parasthetica. Over this period of 20 years I have other symptoms including weakness and numbness in the hands and arms (that did go away), other numb bits like toes etc. a weird light reflex in one eye (one eye takes longer to adjust than the other especially at night) and now a blurring in one eye and other symptoms. I have got residual nerve damage in various places in my body now though and fatigue and seem to suffer from a lot of chest infections etc.
I have repeatedly seen my GP over the years and been told various things from RSI…to the latest ‘an over-active nervous system’ – which just sounds rubbish… and also has undermined my confidence in what is going on in my body.
This year with my eyesight failing and other problems I felt I couldn’t carry on with this as a diagnosis (or face another bad experience in the NHS) so saw a neuro privately – who it turns out is rather strange and says that yes MS would be top of any other neuro’s list but not hers….. but she couldn’t properly explain what is happening either … and now I have heard more about her and it seems that she has a very bad reputation.
I did have MRI’s with and without contrast of brain and all of the spine and apparently lesions cannot be seen. I had no other tests and she did not look into my eyes either.
Since then I requested all my medical records from my GP…and found that the original neuro 20 years ago wrote to my doctor that I had a very pale optic nerve (in the eye that is now playing up) and that MS was something that they would have to bear in mind. Elsewhere in my notes MS is mentioned as a possibility. I wasn’t told about the eye problem at the time (it only started causing problems around 8 years ago) and was in fact repeatedly told that I didn’t have MS and they in fact discharged me… although one young neuro in passing said to me that "if you do have it we probably wouldn’t tell you as there isn’t anything we could do about it”.
So… now I am going back into the system (can’t afford to go keep going privately) but my confidence with doctors is still at an all time low.
Basically I don’t want to be left in the same position again… it is obvious to me that I do not just have trapped nerves… but I don’t want to leave the neuro’s office without at least a group of possible conditions this could be if not MS so I can make my own decisions.
I will ask for EVP and will take in the MRI’s I had done and a short symptom history and the original neuro’s letters.
I do not really want an LP – so wanted to ask you guys whether there is anything else they could possibly diagnose from an LP – or it is just MS?
I also wanted to ask any of you what you thought a possible differential diagnosis might be so at least I could be prepared to ask them straight out to make sure I get any appropriate tests.
Is there anything else anyone thinks I should do?
I just want them to say – even if it isn’t MS because whatever I have doesn’t meet the MacDonald criteria – then at least everything else is ruled out, or if not I can get a second opinion elsewhere.
I can live with the ‘maybe’ or ‘it is’ but not the we’re not telling you…..
I am in the UK and will only have about 15 mins in my first consultation back in the NHS next week... so I am desperately keen to not leave his office with the same situation that has happened to me in the past.
20 years ago (age 15) I started to have a numb patch in one thigh. My GP at the time told my mother that I had MS or a brain tumour…. I go and see the neuro at that point and after 2 or 3 appointments – no MRI, no LP, no EVP – and they told me that I did not have MS just trapped nerves. The numbness never goes away over the years slowly spreads over the thigh area When this happens in the other leg 10 years ago I am sent back to a different neuro – again am told to my face that it isn’t MS but meralgia parasthetica. Over this period of 20 years I have other symptoms including weakness and numbness in the hands and arms (that did go away), other numb bits like toes etc. a weird light reflex in one eye (one eye takes longer to adjust than the other especially at night) and now a blurring in one eye and other symptoms. I have got residual nerve damage in various places in my body now though and fatigue and seem to suffer from a lot of chest infections etc.
I have repeatedly seen my GP over the years and been told various things from RSI…to the latest ‘an over-active nervous system’ – which just sounds rubbish… and also has undermined my confidence in what is going on in my body.
This year with my eyesight failing and other problems I felt I couldn’t carry on with this as a diagnosis (or face another bad experience in the NHS) so saw a neuro privately – who it turns out is rather strange and says that yes MS would be top of any other neuro’s list but not hers….. but she couldn’t properly explain what is happening either … and now I have heard more about her and it seems that she has a very bad reputation.
I did have MRI’s with and without contrast of brain and all of the spine and apparently lesions cannot be seen. I had no other tests and she did not look into my eyes either.
Since then I requested all my medical records from my GP…and found that the original neuro 20 years ago wrote to my doctor that I had a very pale optic nerve (in the eye that is now playing up) and that MS was something that they would have to bear in mind. Elsewhere in my notes MS is mentioned as a possibility. I wasn’t told about the eye problem at the time (it only started causing problems around 8 years ago) and was in fact repeatedly told that I didn’t have MS and they in fact discharged me… although one young neuro in passing said to me that "if you do have it we probably wouldn’t tell you as there isn’t anything we could do about it”.
So… now I am going back into the system (can’t afford to go keep going privately) but my confidence with doctors is still at an all time low.
Basically I don’t want to be left in the same position again… it is obvious to me that I do not just have trapped nerves… but I don’t want to leave the neuro’s office without at least a group of possible conditions this could be if not MS so I can make my own decisions.
I will ask for EVP and will take in the MRI’s I had done and a short symptom history and the original neuro’s letters.
I do not really want an LP – so wanted to ask you guys whether there is anything else they could possibly diagnose from an LP – or it is just MS?
I also wanted to ask any of you what you thought a possible differential diagnosis might be so at least I could be prepared to ask them straight out to make sure I get any appropriate tests.
Is there anything else anyone thinks I should do?
I just want them to say – even if it isn’t MS because whatever I have doesn’t meet the MacDonald criteria – then at least everything else is ruled out, or if not I can get a second opinion elsewhere.
I can live with the ‘maybe’ or ‘it is’ but not the we’re not telling you…..