Diagnosis or not, that is the question?

New diagnosis and before diagnosis
1

Hi All

I’m at the confused and thrashing around for information stage.

Went to my GP (again) with balance problems this time. Noticed on holiday that I couldn’t walk across the camp-site in a staight line. Later had real problems on running machine at the gym as I couldn’t run normally. My gait was wide and unstable and I had an embarrassing incident when I fell off the treadmill completely.

GP was very sympathetic but, one the face of it, perplexed. I went back a couple of times and he referred me for a neurology appointment. I got a load of suggestions for different places I could go but opted for the quickest appointment, even though it meant travelling for an hour to get there.

Neurologist took a history (some interest in previous balance problems and visual disturbances/blank patches in my vision some years ago) and did the usual tests. Referred me for MRI scan which I had last Saturday.

Follow up appointment on Monday. Neurologist hadn’t had a full report, as scan only done on Saturday, but got pictures up on screen and straight away pointed out clear lesions on my brain stem and in other areas of my brain. He said immediately that it looked like MS (but after reading the difficulties and delays the rest of you are having with diagnosis I’m now less certain?). He’s referred me for a lumbar puncture in a couple of weeks, ‘to confirm that it’s MS’, but, again, having read around, how sure can I be?

Saw my GP again yesterday. Once again sympathetic, although he said he had suspected MS himself bu didn’t want to voice his concerns in case I worried! I had known something was wrong for months, thought I’d had a stroke or got a brain tumour so hearing that it might ‘only’ be MS was a strange kind of relief.

Now I have to prepare for going back to work. Still feeling tired, tingly feelings in my hands and pains in my arms, balance still an issue (‘drunken staggering’ pretty noticeable). What do I do? Go back to work (I’m a science teacher) with symptoms and try to struggle through? These symptoms have been pretty constant for several weeks. How long does a relapse last? How do you know when your in remission?

Too many questions for one post. Any answers much appreciated.

Rob

2

Hi Rob, and welcome to the site

It sounds suspiciously like a diagnosis to me, but I’d say wait until you see it in writing to be sure. I’m not sure about the lumbar puncture though. About 10% of people with MS have a negative result, so I think I’d be asking my neuro what happens if mine is negative if I were you. (And basically asking if it’s necessary!)

I would normally say to not go back to work during a relapse, but it does rather depend on the type of relapse you’re having. If you think that you would struggle to do your normal job, then there really is little point in risking making things worse by pushing yourself; better to wait until your symptoms improve. And would it be safe to be working in a science class if your balance is bad? (I can’t imagine carrying around nitric acid with a dodgy gait!) Actually, just re-read your post - if you are suffering from fatigue, working will almost certainly make this a million times worse :frowning:

How long a relapse lasts is a “piece of string” question. By definition, a relapse has to last at least 24 hours, but there is no given maximum. The average is 6 weeks or so, but it’s possible to have relapses last up to a year (or maybe even longer). How you know remission is on its way is signs of improvement. These can be very subtle; so subtle that you don’t even notice until you wake up one day realising that you feel better. It can be two steps forward, one step back too - just when you think you’re getting better, you have a bad day :frowning: But the general direction is positive.

Resting lots, getting help from neurophysio or meds can help a lot. (So make sure and get everything you can from your GP!) And not smoking, eating sensibly and taking high dose vitamin D3 certainly won’t hurt.

Hopefully you’ll start to see some improvement soon.

Karen x

PS You are absolutely right: MS is not the worst thing that can happen to a person!

3

Hi

My neurologist diagnosed me without seeing the radiology report.

I found the speed of dx surprising too after reading all the posts on here from people who have waited ages for answers.

Think it seems to depend on who and what kind of neurologist you have.

A M