My journey so far

Hi, this is my first post here. I’m not diagnosed as yet and don’t really have any questions, but I thought I’d share my journey so far. Sorry if it’s a tad long, I’ll try to summarise.

I’ve had symptoms dating back to the 80s (I’m 55… I think). More recently though (3 years ago), I started with pins and needles which began in my feet, then hands, then all four limbs.

This went away, but then shortly after I started with constant tinnitus in my left ear (which I still have) and constant dizziness/vertigo (which is now intermittent).

I then started with left sided pain (arm, leg and face). I say pain, but it was more of an annoying achy zing. (Like when you bite foil with fillings).

I also had a recurrence of left eye pain last April. I’ve had this before but not so severe and I’ve simply put it down to needing an eye test. I went to the optician once it had calmed down, but he found no changes and also nothing untoward.

Added to this were the intermittent sharp shooting pains in my feet, hands and ribs. It was only when I started with this in my face and tongue that my gp referred me to a neurologist (end of Nov).

I am taking gabapentin which has helped with the “pains".
My symptoms now are more of a left sided numbness and eye ache.
My walking is wobbly like a cross between a bouncy castle and a disappearing leg (left side only).

I saw the neurologist last month (mid Feb). He was very thorough, but so fast, I was exhausted from him annoying every nerve in my body! I had bloods done (GP previously checked all the usual suspects), and I’m now waiting for an MRI which after chasing it up is booked for a week on Saturday. (someone didn’t pass on the referral!)

So apart from a few other minor niggles, I think that’s about it so far.
Hopefully the MRI will be informative in a good way.
And I also hope that my experiences are helpful to others in the waiting game

HI, well your neuro sounds good…just wait and see what the MRI results are like.

Yeh, it could be MS…but it could be a number of other neuro problems too.

Take care,


So, I had my mri on Saturday, job done. Just waiting a few weeks before I call the neurologist dept. Then in the middle of dozing through emmerdale, I get a recall for a " more detailed" scan tomorrow evening. Is this normal? The radiologist assured me it was nothing scary, has anyone had a similar experience?

Wow your neuro sounds brilliant, mine not so much. Had the brain MRI didn’t show lesions on my brain. Did show my brain slipping out of my skull but that’s a different problem. Have got spinal lesions so now waiting for an antibody test, had symptoms for the last 10 years (I’m 36 now) always got told different things. I have a lot of the same symptoms as you but a lot can be explained from the brain slipping thing. Was going to have a lumbar puncture but that’s been cancelled as it could paralyis me so antibody is my next step. Haven’t had a more detailed scan call back though.

Hi K8y, maybe the one you had has blurry bits and he needs a clearer picture. Top bloke!


All scans done… I hope…I thought maybe it was a blurry bit too Bouds, but they said they needed a clearer view of some nerves to dot the i’s and cross the t’s.

Sometimes its better if they talk technically rather than in layman’s terms!

Just a waiting game again now.

So far neuro and radiologist have been on the ball.

Sounds like you’re in the process of a complex diagnosis. With your brain slipping thing plus spinal lesions, it must be difficult to identify which symptoms are caused by which anomaly.

Yeah it has been difficult to pin point what symptom belongs to what, neurosurgeon is talking about major brain surgery but can’t go ahead until they have found out if it’s ms or not. The only way I can try and work out for myself is which symptoms go away for ages and then come back for some reason and which ones are constant.