Neurology for possible MS

[spiderleggings]

I have a neurology referral coming up ( waited 8 month) UK-NHS

I have a list of symptoms that I've been experiencing for over 2 years. It took 3 attempts with a GP to get a referral

I'm nervous about the appointment as I've been waiting so long ( and the list keeps getting longer as time has passed)

Do I just reel off all the symptoms? Would that be expected? They know it's a referral for possible MS but I'm just worried I won't get enough time to explain everything that's been going on for 2 years plus

Anyone been through this initiative assessment please?

Thanks

I had something similar years ago. Mine was connected to stress though. I wrote everything down and just handed it to them.

Sorry you've waited so long 😞

With MS they like to look at symptons over two years, write everything down. Expect to have an MRI scan either on the day or more likely you will be referred for one. If you are to be referred to one you may not get the result that day. The neurologist will need to interpret the scan. Hopefully you will not have MS, if you do ask the neurologist to refer you to the MS Nurse.

I agree with PP

Write everything down in as much detail as you can - times dates and duration of symptoms / any triggers noted / anything of consequence.

This can be read by them quickly and save you the time and stress of remembering everything while under pressure

Expect to have physical examination , bloods , probably MRI and possibly a lumber puncture if this is the possible diagnosis

Good luck

My daughter was diagnosed earlier this year at 17. She's had symptoms (some may be coincidental) for several years and was under the care of another hospital but her MRIs were clear then.
But earlier this year her right side went tingly then numb and after 111 told her to go to A&E, they did some physical push pull type tests, took a bit of history and he referred her for MRI which they fortunately did the next day. The doctor immediately said it looked like it could be MS (lesions on the brain and spine) but said for MS it's eliminating everything else so they admitted her so she would be on hand for further tests. Over a few days she had repeated physical tests, blood tests, saw the occupational therapist, talked to two different neurologists, and was booked for a lumbar puncture. The MRI and lumbar puncture are really the essential tests to determine if it's MS. She was put on heavy steroids for five days as symptoms were active and acute. Two months later called back in and they told her it was MS. Then there was a few months of getting vaccinations (as the drug she would eventually be on will make her immunocompromised), get her A levels done, and decide about which drug to take.
Now, while she still has the odd unexplained pain or issue by and large she is healthy. Fatigue is probably the biggest issue.
It's a bit of a slog to diagnosis and we are fortunate to live near an excellent neurology department. She now has several appointments throughout the year (just had another MRI, meets with neurologist next month, and already has two appointments booked in for next year). No one wants to have MS or any other medical issue, but new treatments have improved prognosis and continues to do so all the time. All the best.

They will expect a long list; the nervous system controls your whole body, so lots of different bits go wrong that don't always seem connected. Some people draw/print a body shape to list their symptoms on that.
In the appointment there will likely be a neuro exam, the touch your nose, follow my finger etc but more in depth. They will do a referrral for scans, as people said. They may tell you what they suspect as different disorders have characteristics they spot.
I know you suspect MS, but it may also be worth looking up FND if you've never heard of it. Its the 2nd more common reason people see a neurologist + many symptoms mimic MS. Neurosymptoms.org is the best website for explaining it. Some people find it can resonate with their symptoms.
Good luck!

My ds was referred to neurology at 11 with symptoms that could have been MS. They just asked about symptoms and tested reflexes etc. he was referred to a neuromuscular specialist and after various tests, mri etc got a diagnosis at 15. His isn't Ms - he has hereditary spastic paraplegia which mimics it in many ways.

So they won't just test for MS. They'll test to rule out or in what causing the symptoms you experience.

MS is not the terrifying monster it used to be. The treatments are fantastic these days and to get diagnosed would mean getting access to fantastic, effective treatments and support.

I've had it for many years and since diagnosis as a young woman I've travelled the world, had a successful career, started another career, had dc and had a lot of fun.

Like PP said no one wants MS and it's scary but it's something many many people live with and have long happy lives.

Follow the good advice on this thread and look after yourself. Unashamedly hugging you xxx

What a lovely positive post. So glad you're having a good life.

Thank you so much for all your replies

@Tadpolle lovely post and positive to know what can be achieved

I'm 40, have had all my children and I'm on the cusp of a big work promotion which will hopefully push me in to the next bracket for earning and responsibilities. Selfishly I don't want any diagnoses to stop this track I am on!

I have written down all symptoms ( relevant or not) spanning over 2 years and will just hand them the list.

MS is in the family and although I don't think it's hereditary, I do recognise some of the symptoms

Maybe someone can answer this- if I am referred for more tests like MRI etc, will I be back on the waiting list? Or once you're under the care of neurology do things speed up? It feels like I've been battling for almost 2 years already!

As to your last question it depends on your hospital I guess. My DDs first MRI referral was six months so we went private. As I said, the more recent one was an A&E referral so she got it the next day. But we are near a big hospital with at least three MRI machines. I imagine if they suspect it is a serious condition you will be seen sooner rather than later.

@Tadpolle many thanks for pointing this out. I was also diagnosed with MS at 20 and been on various medicines ever since to suppress it (33 now). Currently asymptomatic and nobody I meet knows unless I tell them.

Mine was picked up on an MRI as part of a research study. Only with hindsight did I realise the symptoms I'd had, were not normal. But if it is MS, is absolute not the end of the world. The treatments are much better now.

I still work full time and it does t stop me doing anything. And as a bonus I qualify for a disabled rail card. So cheaper train travel! I'll take that.

Just an update- has Neurology appointment and he did various physical tests like balance and looking at eyes etc

He doesn't think it's MS which is a relief! He mentioned Functional Neurological Disorder which I've never heard of. No known cause but I'm referred for an MRI to rule out anything else

Anyone have experience of FND?

Never heard of it? Glad you had some relief though. Hopefully you don't have too long to wait for the scan.

I was diagnosed with fnd after a similar process. The way it was explained to me was that the hardware of my neurological system was working fine but the software wasn't. There's some research recently that shows changes in the deep functioning of brains in sufferers.
It's quite a controversial disease as some people believe that sufferers are faking and there is nothing wrong with them. This is obviously incorrect. Some sufferers can be very upset by the diagnosis, not least because there are medical professionals who think the same.
My FND is almost certainly as a consequence of trauma (I have a PTSD diagnosis) and having specialist PTSD treatment has effectively cured me. FND is what shell-shocked victims with physical symptoms would now be diagnosed with so this makes sense to me. However some people with FND without a trauma history find this very difficult as there is effectively no explanation for their disease.
PM me if you have any questions.

I’m glad he doesn’t think it’s MS, OP. 18 months ago I suddenly developed very dramatic MS symptoms. My legs went numb and I was unable to walk without dragging them and limping. I saw a GP and failed a neurological exam so was sent to a&e where they made an urgent referral to neurology. They found a couple of abnormalities in their exam so I was sent for an MRI of my brain and cervical spine. At that point I was sure I must have it and was starting to plan for it in my head. A month later I received a letter in the post that simply said ‘Your MRI was clear so I am now discharging you’. No follow up, nothing. It’s happened several times since then although not as dramatic but I’ve given up on the NHS taking an interest. Perhaps mine is FND too.

Functional is what used to be called psychosomatic, eg it’s a psychological problem rather than a physical one in origin. This doesn’t mean it isn’t a serious and real condition, but the treatment is obviously very different.

Unfortunately you would get a lot more help if it was MS.

Years ago I developed some symptoms and thought I miggt have MS. Weakness in hands and legs and other symptoms. I got referred to a specialist and he gave me a few simple tests. He said I didn't have it. I was worried about wasting his time. He was really nice and said not at all.