Awaiting first neurologist appointment

New diagnosis and before diagnosis
1

Hi everyone.

So on Wednesday I have my appointment with a neurologist, as my doctor and my physio both think I have ms.

My symptoms first started roughly in 2011, with pins and needles in my right hand. This slowly progressed to my left hand also.

Nerve conduction studies showed nothing. I have also been extremely tired on and off since then.

Everything stayed that way until January 2014 when I was taken into hospital for two weeks with suspected meningitis, which it turned out not to be. I was discharged and sent on my way. Later that year the pins and needles started spreading to the whole of my arms and my neck. I was given a full spinal mri except neck, which again showed nothing.

In April 2015 I started suffering from a bit of memory loss. Leaving keys in the car, that sort of thing. Then in November 2015 the fun really started to begin! My legs gave way whilst I was going down steps, resulting in me damaging my shoulder tendons (hence the physio). In January 2016 this happened again, but resulted in me knocking myself out and suffering a pretty bad black eye!

From then on it has been pretty scary. Driving has become very difficult, with me often not knowing how I got to my destination, and my depth perception of parked cars being horrendous. I even left the keys in the car over night.

As well as this, my short field vision completely goes blurry from time to time, and no amount of straining stops it. I visited the opticians who found nothing wrong.

Also, and one of my main concerns now, is that my legs are randomly seizing up, as if the muscles are just fully contracted. This happened again yesterday whilst I was sat at work and was very embarrassing. Other times my brain tells my legs to move and they just won’t! This has coincided with the pins and needles spreading to my back, legs and feet, as well as my left knee which is horrendous.

Sorry for the long post but I needed to get it off my chest! Am I likely to have it?

Many thanks in advance guys!

2

Hi.

Can’t really answer your question! When I saw the neurologist I was told that my symptoms could be due to any one of 400 conditions. Neurological issues are an absolute minefield. I’m a wee bit behind you, in that my MRI brain and full spine was clear (for ms lesions that is), and I’m awaiting nerve conduction tests and physio appointment (huge waiting lists in my region!). Everyone treating me has made it clear that they wont speculate as to what the problem is. My GP has been trying to get me ready to accept a ‘we don’t know’ diagnosis, as it’s pretty common! I’m on this board because MS is one of the 400 conditions, and it’s got lots of really supportive people on it, who are very happy if what you have isn’t MS!

Take care

Paula

3

Thanks Paula,

The one test I have not had is the MRI brain scan, so I assume the neurologist will order that one when I see him on Wednesday.

I had a neck mri done a few weeks ago which also showed nothing (I was secretly hoping it would show something, but hey). That is the most annoying thing really, every test I have had since 2012 has shown nothing, including all my bloods. So I am very used to being told we don’t know :frowning:

Again many thanks

Carl

4

Hi Carl,

I had brain and spine done at local hospital and was told nothing significant found. I then went to see private neuro who found lesions on both brain and spine.

Having gone through this i would always get a second opinion with something as important as this especially as i have neurological symptoms.

5

Thanks for the advice.

Do you have any advice on things I may be asked? Things I should ask the neurologist etc?

6

Just thought I would post an update.

I had my neurologist appointment earlier today. After doing some tests he found I had brisk reflexes (whatever that means).

He has booked me in to have a brain mri, lumbar puncture and evoked potentials testing done (all on the same day), so hopefully I should know within the next month or two. I take it if these all come back fine I definitely don’t have ms??

He also said it could be chronic fatigue syndrome (as he was focusing on me being tired) but I don’t think it is, as I sleep well and have very good days/weeks where I am not tired at all. But we shall see.

I am just so happy I am not having to wait much longer to have a diagnoses.

7

Hi, good to hear your neuro is doing all the tests.

Sometimes the tests prove nothing but the neuro will have to satisfy himself, before he gives you a diagnosis.

Take care.

luv Pollx

8

Hi again

So I have spent the weekend in hospital, having lost feeling in my right leg/foot and falling down the stairs. Didn’t get the feeling back until 13 hours later!

The team at Blackburn say it sounds like it was part of my existing potential ms stuff, but couldn’t really do much as they have none of the facilities required (only Preston and Manchester have their own neurology departments up here), so have sent me home telling me to let my neurologist no what happened.

They did want to give me steroids but then changed their mind when I told them I was awaiting the full tests.

So sent home, still weak in my leg, can’t walk properly or drive, and can’t have any medication. Yikes :frowning: