Opinion please

Hi I have just found this site and would value an honest opinion!

Before I start I would just like to say I am not a neurotic person just extremely frustrated and need some answers.

I have been experiencing symptoms on and off since 2004, so as you can imagine this could be a long story. (I will try and make it short) In 2004 I woke one day with numbness in the left side of my face and left arm. After a number of weeks Drs put it down to a car accident I had in 2002. Symptoms continued on and off. In 2009 the same thing happened, only worse, extreme nerve pain in the left side of my body. MRI neck and head was taken, neck showing some signs of straightening but nothing of any significance and the pain was put down to this. Head shows focal area of high signal in the subcortical white matter of the right frontal region (whatever that means!). Dr asked if I had ever had a head injury which I had not. When I asked him what it could be he said it could be an early sign of MS but not to worry its probably nothing. Over the years the neck pain has continued on and off and I have not thought about it too much until August 2012 when all the symptoms and more came back.

It starts with neck pain and the overwhelming need to sleep. I go to bed and can sleep for 48 hours solid. When I wake up my left side has altered sensation. Half my face and tongue are numb, double vision in my left eye, heavy numb feeling in my left arm with what I can only describe as bussing, pins and needles/electric shock feeling in my hands and fingers, dropping things out of my left hand however I don’t think my grip has altered, twitching/cramp all over my body, cramp in my lower eye that then turns to such a bad twitch people ask what is wrong with it, numb left foot. This can last for 1 to 6 weeks. When all these symptoms go, apart from a slight altered sensation in my face and arm everything resolves. I have seen so many Drs and specialists since August and still not got any answers.

1st Dr (locum) – Pulled muscle in neck

Physio – herniated disc in neck

Optician – Need glasses for reading (when numbness goes vision is fine)

Musculoskeletal Specialist – Herniated disc, MRI neck shows no significant change, needs Neurology referral.

2nd Dr (my own) – discussed all symptoms referred to Neurology.

Neurologist – No real history taken, examined no real deficit on left side other than slight numbness on face and arm on the left, (symptoms had resolved by this time) checked head MRI from 2009 and said healthy however she will do a repeat MRI and ultrasound of the carotids and vertebral arteries but does not expect to find anything. In the event of nothing being found she will put it down to silent migraine!!

It has taken me months to get to this point and I don’t feel the neurologist has taken me seriously. Whatever this is I just need some answers I can then deal with it.

I do understand MS is very difficult to diagnose and just reading some of these posts I see I am not the only one struggling to get answers. I am left feeling frustrated and low in mood!

Hello and welcome :slight_smile:

I can understand your frustration, but although the neuro was less than enthusiastic, at least you’re going to get a new MRI and that may be a big step in the right direction to finding out for sure what’s going on.

Your previous MRI report basically means that you have a lesion in the front half of your brain (if you read my “sticky” post about the brain, the report should hopefully make more sense). Lesions can be caused by lots of things, including migraine and MS, so deciding what caused them relies on symptoms, history and the clinical exam, as well as other test results. At the moment, silent migraine seems a very sensible possibility, to (unqualified!) me at least, as migraine can cause all sorts of neurological symptoms and can occur without headache. Also, the fact that your attacks always seem to start the same way and seem to have the same symptoms which then (apart from your face and arm) recover fully does sound more like migraine than MS to me. Obviously I could be wrong though!

I think, if I were you, I would go with the flow for now and wait to see what the tests show. If the neuro decides it’s migraine, then I’d want a second opinion from a headache specialist and I’d want to know what they are going to do about preventing them (there are some excellent meds available these days).

I hope you get some answers very soon - not knowing is no fun :frowning:

Let us know how it goes?

Karen x

Hi karen

Thank you so much, your post about the brain has made things a little clearer. Just wanted to let you know i have had the MRI and other tests last weekend and am now waiting for the results, (very quick considering i only had the neuro app the wk before, not that im complaining i note other people have to wait months). After reading some of these posts i realize im not alone in my situation and its a big relief just knowing that this forum is available should i need it!

I will send you an update once i get the results.

Kazz xx