Please can you help me with neuro appointment.

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Please can you help me with neuro appointment.

Postby lucy101 » Mon Sep 03, 2007 1:55 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…..
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Postby jimmylegs » Mon Sep 03, 2007 6:29 am

hi lucy, man am i ever amazed at the things ppl have to go through with this. when i got dxd i never thought of myself as lucky, but after reading some stories on this site, jeez.

there are a few diff dx things out there and the big one as far as i know was what mine was most likely to be - b12 deficiency. but i had big honking b12 deficiency lesions too, not a clean mri.

unfortunately unless something i don't know about has developed, there is no test to "diagnose" ms. they can only look at how many checkmarks you have on the list of things x% of the ms population have, and then give you a percent probability that you have "ms", whatever that is.

i think, personally, that if you have a clean mri they are not going to tell you you have ms.

and now, just to be me, do you take any supplements to help with nerves/immune stuff?

and in spite of what i've said, i hope your next appointment is more satisfactory than the other ones you've had!
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Postby thinkingoutloud86 » Mon Sep 03, 2007 8:47 pm

Hi Lucy-I'd have to echo much of the post of jimmyleg's...there isn't a definitive method for a MS this point, it is a combination of looking at different signs/markers as we well as ruling out other possible conditions...for example, lyme disease is one condition that they test for...I don't know what it is like in the UK, but if my memory is serving me right (which may or may not be the case because i was a little spacey back then), but I received some blood work for possible lyme disease as well as other possible explantions...i also had a lumber puncture and while i can't speak for others, it wasn't that bad for me...

Best of luck,

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Postby jimmylegs » Tue Sep 04, 2007 5:53 am

about the LP, what it can tell you related to MS is whether you have a chronic infection in your central nervous system, indicated by comparing o-bands in the cerebrospinal fluid, compared to normal serum in the rest of you. some ppl with "MS" don't have o-bands, so it's kinda 'meh' as far as i'm concerned.

here's a bunch of stuff about the test and what it can be looking for in general:

if you do get the lumbar puncture, show whoever's going to do it this site:

i think hopefully this stuff is pretty much common knowledge, but maybe i happened to be one of the ppl that are not helped by even the most careful angle of insertion. i only found all this out after the fact and never asked my neuro how he'd done my LP. but if it comes up for you, why not be sure it's all known, when someone's about to stick the needle into your own spinal cord!!

they might tell you to stay lying down for a bit after, say, 30 min, but if you get the post-LP headache anyway, in my case it meant if i wanted to avoid going back for the blood patch on the puncture (after the crushing headache had gone on for days), i had to stop trying to function normally and go lie down for three days to give the wound a break from the pressure involved in being upright. it worked, i did not need the blood patch in the end.
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Postby lucy101 » Tue Sep 04, 2007 1:09 pm

Thank you so much Jimmylegs and Thinkingoutloud for your posts to my ENORMOUS post,

I will definitely print out and take the LP info.... although I just really don't want one! Will have to see what I will lose time/diagnosis wise if I refuse.

It is good news about the clear MRI I know... although I know that people can have clear MRI's and still have MS.

As to diet and supplementation Jimmylegs - I put myself on a diet based on Swank/Jelinek/BBD about 5 months ago... and feel pretty good (certain it is healthy for me anyway as I definitely had a strange reaction to saturated fat - or in in fact any high fat food - almost like a kind of asthma). I look much healthier too - as I have been doing yoga, swimming or weights on good days - weirdly I think I might be in the best shape I have been in years....

I am taking:

a multi-vit


Vitamin D3 2000iu (will go to 4000 iu in the winter)
Calcium 800 - 1200 mg
Magnesium 800 mg
Fish oil 1 dessert spoon
Flax OIl 1 dessert spoon
Vitamin B12 3000mg sublingual
Lecithin 1 desser spoon
Acidophilus at least one capsule

I take a bit extra on some days of:

Vit E
Vit C
Co-enzyme Q10

I manage all of them about 5 times a week.... but am really struggling with taking the tablets (feel nauseous and can hardly get them down)

I actually wanted to ask if anyone had used a multi-vit called EXTEND PLUS - it is a powder which I am hoping I might be able to get down more easily

I need to go to my GP and get all my levels checked too - I did have a B12 test just before I started the diet and was told it was fine... but didn't ask the exact level.

Any other suggestions would be gratefully recieved!
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