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strange symptoms not sure if related to migraine of its something else

(9 Posts)
Flowerfae Thu 28-Jan-16 19:11:44

Probably going to sound like a massive hypochondriac here, but here goes smile

I was diagnosed with chronic migraine two years ago after having to give up my nurse training during my management placement due to the headaches which affect my concentration and memory, which worsened if I was stressed, meaning that I couldn't do the job. Then last year I was diagnosed with epilepsy (which I had before as a child, but I had tonic
clonic seizure then and partial seizures but had nothing for 11 years) I was diagnosed last year with complex partial seizures and have been put on medication to control them.

I am also on a high dose of ibuprofen for the migraines which does help with the headache part of it but not the other symptoms I get which have been ongoing since before I was diagnosed with epilepsy.
I was referred to a specialist for the epilepsy diagnosis and she referred me for an MRI and told me to keep a diary of all the symptoms I get and she referred me to a neurologist.

I had the MRI which as come back as normal and have seen the neurologist today, but I didn't really get chance to speak to him, he kept firing questions at me about the deja vue (which I get before a partial seizure) and the flashing lights. He wasn't interested in what I had been told to write down and bring with me to the appointment but has sent blood tests off and wants me to go back and see him in december. He has put the diagnosis down as Migraine but when I mentioned that I lose feeling in my legs he said 'thats not migraine' but then went back to the flashing lights.

I do realise that symptoms such as concentration problems and the lights and the nausea and IBS can be due to migraines however I'm not so sure about the other symptoms I'm getting and I've a feeling it might be MS but I realise that this makes me look a right hypochondriac smile

The symptoms I get seem to come all at once then nothing for a while, apart from the pressure I have at the left side of my head which is constant.

Pressure left temple area (like someone is pushing my head with one finger, and also a feeling which you get when you clench jaw at one side)
Concentration problems
Light headedness
Partial Seizures (this happens if the migraine lasts for 3 days)
Facial numbness (Majority of the time, along with pins and needles)
tight feeling down left side of face, also feels like the left side of my face is pulling downwards)
tingling feeling across scalp
mixing words up - can say a sentence but get the words the wrong way around
Loss of feeling legs - knee down to feet both legs or sometimes just right leg
Blurred Vision left eye - when looking up and to one side
Pin pricks of light and flashes
back spasms
Numbness - fingers and toes
Twitches - arms/ legs
pins and needles in feet
right sided weakness (I can't lift a pan with my right hand)
balance problems

Also the other night my right leg went completely numb, I tried to stand up and it just kept sliding to the left so my husband had to pull me up.

The night before last I felt a tightness just under my ribs which felt like I had a corset on and I could only take in half a breath, this lasted for 4 minutes (this has only happened once)

Maybe it is migraine but .. something doesn't seem right. I'm not sure if I should right everything down and take it to the GP, he was a bit funny about referring me to the epilepsy specialist (lots of huffing and puffing). Don't want to appear a fruit loop lol smile

Flowerfae Thu 28-Jan-16 19:12:47

apologies for the thread title it went wrong ..supposed to say 'or if its something else' smile

gingeroots Thu 28-Jan-16 19:27:33

Hi - no knowledgeable advice I'm afraid but please don't be deterred from getting this sorted because you think you're making a fuss/appear to be nuts.

Your symptoms sound awful and they also - to my medically untrained mind - sound related .Some neurological thing ? ( note technical term )

I'm so sorry that the neurologist not listening to you ...is there any chance you could go back/talk to the epilepsy specialist ?

I think you've got to git your teeth and go to battle to get this taken seriously .Can you change GP ? See a different one in the practice ? I wonder ( just brainstorming here ) could you see a practice nurse ,go through things and maybe she/he could intercede with the GP on your behalf ?

But yes ,write it down as you have here and show the GP .

Good luck ,hope you get better care . x

Flowerfae Thu 28-Jan-16 21:25:37

Hi gingerroots

Thankyou for the reply, there used to be another GP at the practice but I havn't seen her for ages so I'm not sure if she is there anymore otherwise I'd go to her smile I'll probably just go and see the GP who's there and if I get nowhere then see about transferring to another practice.

Thanks again smile

PJ67 Thu 28-Jan-16 23:33:30

Hi. I can see why this must be worrying you and it's a shame you didn't get more answers at the appointment. The only thing that seems to go against ms is that your mri was normal and I think there would usually be some changes. I would phone your local hospital and ask if there is an epilepsy or neurology nurse specialist you can speak to. They will have more time to go over things and give you some advice.

BoboChic Thu 28-Jan-16 23:37:27

This is awful. You shouldn't have to live with debilitating symptoms like this.

Can you pay for a referral to a private neurologist?

alltheworld Thu 28-Jan-16 23:40:28

Light flashes can be detached retina, v serious or the jelly in yr eye detaching from retina, less serious but needs to be checked. However no idea re yr other symptoms

Akire Thu 28-Jan-16 23:42:19

Keep notes ask to see someone else- lots of neuro stuff can't be diagnosed but they could probable do few more tests to rule out other stuff in the time being.

Some neuros can be very off handed and dismissve part of the course. Worth asking GP what his report said. Still often tell GP one thing and you any other!

Pedestriana Thu 28-Jan-16 23:49:06

I had a friend with epilepsy and some of the symptoms you describe seem to tally with what she had from time to time. with migraine in the mix it's hard to tell where one may end and the other start but it sounds horribly debilitating.

I think you need to note everything down, and push for the GP to refer you on to the epilepsy specialist.

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