worried...what happens seeing a neurologist?

[lilsmum]

in the past 8 months, i have had 3 very frightening visual migraines (i think that is what they are), it starts off with funny vision like half my vision disappears, then i get a sharp pain in my head (i have suffered much milder migraines for years and nothing like that) then i get numbness in my left arm, and in the left side of my face, i also cant speak, read or spell when these attacks are happening, and today i got very scared as when the attack took place, i couldnt think or say my daughters name!!
i went to my G.P this morning (the symptoms were still there but had worn off) and he has refered me to see a neurologist, i have a private medical policy so i have got a appointment very quickly on the 5th april, but what will they do? i am quite anxious as i dont know what to expect at all

tia xx

[lilsmum]

i got this appointment tomorrow and i am pooing my self!! i got my eyes tested on sat so i know its nothing to do with my eyes....does anyone know if i am likely to be told why this is happening tomorrow? or will they do a CAT scan tomorrow? and tell me at a later date what the cause is...HELP, calm me down lol

[Tiggiwinkle]

lilsmum,
Please try not to worry. My DH used to suffer from these symptoms. The first time it happened I thought he had had a stroke. He was told by our GP that they were migraines, but it was discovered last year that he suffers from "sticky blood" (or"Hughes")syndrome. The symptoms he suffered were due to "transient ischaemic attacks" (actually mini-strokes). He is now taking warfarin and the attacks have stopped.
He had an MRI scan in February and is due to get the results this week.
Please do not be alarmed by this-your symptoms may be caused by something completely different-but perhaps you could ask the neurologist if your attacks could be TIAs.Hughes syndrome is actually quite common and can cause a variety of other symptoms as well.
Let us know how you get on-good luck!

[lilsmum]

thanks tiggiwinkle, i have actually heard of that before, my dads friends wife has it, is it managable then? with medication, i too thought i had suffered a stroke when i had my 1st attack, very frightening

[mummytosteven]

i had a friend who had something like that (including not being able to move parts of one side of her body properly) and it turned out just to be a really bad migraine - called a ?haemoplaegic migraine, rather than anything more sinister.

[lilsmum]

frightening

the other thing that is bothering me is, as well as these scary attacks, i seem to have a "normal" migraine every day, i am taking painkillers everyday

[Tiggiwinkle]

Lilsmum-my dh takes warfarin daily-and will for life-but has not had an attack since he has been on the medication.
Make sure they get to the bottom of things for you now. My DH suffered the attacks for years, and was always told they were migraines by any doctors he saw. He eventually had multiple pumonary embolisms (clots on his lungs) and was very ill because the blood condition had not been diagnosed and treated.

[lilsmum]

[mummytosteven]

we're just scaring you too much now I think - get yourself off the computer, get to bed with a nice milky drink, and I hope the appointment goes well tomorrow.

[lilsmum]

is he on a high dosage of warfarin? my nan is on those..she has heart failure

[lilsmum]

i know, i am MTS, ive got a bloody headache now, thanks for the replies, i will let you know how i get on tomorrow, appointment is 10.30am

xx

[Tiggiwinkle]

Dont mean to frighten you-as I said it may be nothing in your case. But I wish we had been more insistant on getting further tests instead of taking the doctors word for it!
There is a website for the Hughes Syndrome Foundation (which is based at St Thomas' Hospital) which gives details of the condition. (cant do links!) Have a look and see if anything rings a bell with you.

[hatsoff]

Hi lilsmum,

it's very frightening being referred to a consultant - I was referred to a neurologist 5 years ago - which led to being diagnosed with ms. (Your symptoms don't sound like ms to me btw). Like others have said he will probably do a neurological exam which will involve testing yout eyes, your reflexes, your balance (I always get asked to walk in a straight line and to walk on my heels and then my tiptoes - I find it a bit hard to take it seriously). It sounds like a cat scan or MRI scan is pretty likely - but doubt very much they'll do that tomorrow - they usually have to make you a seperate appointment - timing will depend a bit on whether its private or nhs and how urgent they think it is. One thing I would recommend is to sit down before the appointment and make a note of all the things you think may be relevant and all teh things you might want to ask. It's very difficult to remember everything and very frustrating when you've left your appointment and find you forgot to mention something. In a similar vein I would try to get precise answers re follow up - ask what happens if you get new symptoms or a repeat attack between now and your next appointment? Is there someone you can call? Is there a point of contact if you have questions between then and now? I doubt you'll get an answer tomorrow but, with ms, tehre are guidelines taht recommend that after diagnosis you get a follow up appointment specifically to ask questions and/or a point of contact - ie they recognise that you can't possibly be expected to think of all your questions on the spot. I hope it goes ok for you. Let us know

[lilsmum]

ok ladies, i am ack from appointment, he is organising a ct scan, a scan of the blood vessels in my neck, and some bloods taken.

i think the tests are to test for hughes syndrome, he has given me some medication to take for the daily headaches, and tested my reflexes. guess i will know more once i have the scans etc done, should be pretty quick though as i am going private, today was £150 for 10 mins

thanks for all the replies

[Tiggiwinkle]

Lilsmum-I have been wondering how you got on. I really hope I didnt alarm you last night!
Have a look at the website I metioned-sorry, cant do links, but it is under Hughes Syndrome Foundation.
You will see that it is very reassuring, as Hughes Syndrome is easily diagnosed and easily treated.
The danger is in it not being diagnosed, as in my DHs case. It is thought to be the major cause of strokes in "young" people, and also causes migraines and recurrent miscarriage. It is quite common, but so few people (including some doctors!) know nothing about it.

[lilsmum]

thanks tiggiwinkle , i did have a look just now, very interesting, the bit about miscarriage makes me a little worried (as i havent finished at just the 1 dd!!)

i must admit going to the appointment today was really interesting.. one of the 1st questions he asked me was which hand do i write with?(very strange question i thought) but then when i said left, and explained the numbness and visual disturbances were also on the left hand side of my body, he started telling me all about the brain etc, that the prob is with the right side of my brain as my speech is affected (its always the opposites)

quite mind blowing really.. the brain

[Clarinet60]

Just to reassure you further, I had a migraine last year induced by a missed meal. I had really dramatic visual disturbances, DS's face completely disappeared and all I could see was the wall behind him where his head should have been and bright silver outlines everywhere. It was a one-off attack and nothing sinister has happened since.