Potential MS - what to expect

[MSWorries]

I recently got seen at hospital for a variety of symptoms, including not having any sensation in my legs or the front of my torso even though I was still able to walk. My legs have been cramping regularly for weeks and I'm exhausted.

They were going to give me an MRI to check for MS but then the neurologists got called away to deal with a stroke and I was given an outpatient appointment. I'm missing some reflexes in my legs, apparently, as that was one of the tests they managed to do before they got called away.

Now in addition to not being able to feel my legs, I can't feel one of my hands.

Can anyone give me an idea of what to expect at the appointment and if it is confirmed, what is likely to happen? Is there anything that might give me feeling back in my legs?

I'm really worried and I hate the uncertainty.

I was tested for MS after Covid and having similar symptoms.

I had an MRI head and spine, to look for lesions which follow a very distinct pattern and a lumbar puncture to look for something called oligoclonal bands. MRI took around 35 minutes for brain and spine. Lumbar puncture isn’t pleasant, I’m not going to lie, but they do numb you. It’s best you can lie flat for a couple of days afterwards to stop the post lumbar puncture headache. Caffeine helps, too.

While a few of my lesions were very MS like, my oligoclonal bands were negative, so it was ruled very unlikely I had MS. Regardless I was given high dose steroids which resolved the symptoms, so the argument was for something called Clinically Isolated Syndrome (a first “attack” or lone attack of MS, that resolves). For this reason I didn’t have to have any long term treatment, and won’t have to unless I get any more “clinically significant neurological symptoms” in the future.

The diagnosis has to follow something called the McDonald criteria. It’s easily available to look at online.

Thats my experience, and I can say I understand and empathise with the anxiety/fear. I hope you get some explanation for your symptoms. Things moved pretty quickly for me when I presented with the symptoms, so I hope it does for you too.

My experience was … following MRI, after MS being confirmed at an outpatient appointment, taken straight up to the ward to start on large doses of steroids to treat that attack. So large that they are administered in hospital via IV for three days, before tapering off to smaller doses that are taken at home. No need to stay in hospital, it takes about an hour for the dose to be administered and then you go home, and back the next day for the next one.

The drugs were actually quite nice haha, gave me so much energy, I used to come home and clean the entire house from top to bottom!

After two attacks and two corresponding courses of steroids, I got onto a medication for MS and that’s me sorted. I don’t recall exactly when I started the medication but must be almost ten years ago now, and I’ve had no further attacks and am basically perfectly normal. The fatigue is still there a bit.

Good luck OP, hope you get some treatment sorted quickly.

Thank you. it's good to know it's not necessarily all doom and gloom! I just wish I had a diagnosis as it's really annoying not knowing what's really going on.

@MSWorries I hope you don’t mind me asking, but did the numbness come on gradually or did you have any altered sensation before hand?

I too am having some investigations done for sunburn feeling all over my bottom and down my leg with some of the same sensation on my left hand. It’s a worrying time.

There was some numbness below the knees but then the rest of the numbness up to the waist came on over 1 night and by the end of the day it was up to nearly my shoulders. The hand numbness was a later development.

Gosh that’s so worrying! I hope you get some answers soon x

I can empathise with you on this. I hope things move quickly so you can get answers and relief!

So I had the appointment today and they didn’t actually do any tests. They have, however, booked me in for an MRI, nerve conduction tests and a lumbar puncture. They also said that if the numbness spreads further over the weekend I need to be admitted on Monday to have the tests as an inpatient.

When did the numbness start? And were you ill before hand?

Could it be Guillan Barre?

The numbness started 2 weeks ago and has spread up my body since. The hospital said it it spreads to my arms or neck i need to go in and if i develop muscle weakness i need to go it. They haven’t actually said what it could be so i have no idea but I think it’s probably not Guillain Barre as i don’t have any weakness, just numbness, and i haven’t had an infection recently (except a UTI).

A friend of mine was diagnosed with MS at age 20. She's lived a normal life (married, worked FT and had 2 children). She's now 65 and the MS is starting to affect her walking (she's slower and stoops a bit) and cognitively shes slower and has to make lists to remind her of what she needs to do

She has been on medication on and off over the years

I hope this helps a bit 🥰

@MSWorries - have you considered B12 deficiency?

It’s definitely not B12 - they’ve checked all my bloods and I’m not deficient in B12, folates or any of the other standard things that might indicate some kind of nutritional or vitamin related neuropathy.

Did they check your vitamin D levels?
Neurologists recommended you keep above the normal levels with suspected MS/autoimmune conditions.
You would need to take vitamin D cofactors too.

I have ms. My diagnosis took years.

Read up on the updated mcdonald's criteria, it will explain why they are doing tests and what they are looking for. Also nice guidelines for ms treatment etc.

There's various groups that can help. Shift ms is online. Ms society have local groups depending on where you are

If it is MS, it may take a long time to diagnose as there is not a single definitive test. The tests you have arranged are all a starting point. It is possible to have a clinically isolated event and it may never happen to you again. I was given an MS nurse as it was a possibility but it wasn't diagnosed until I had a second relapse five or six years later. I am now 61, diagnosed over 20 years ago and it is only now that I am starting to have some problems with mobility. I was petrified when it first occurred (left side paralysis which came on over a couple of days) but it certainly hasn't been all doom and gloom!

So i was in hospital last week for most of the week. They did an MRI of the brain and spine and took loads of CSF, did loads of blood tests and gave me loads of neurological tests. They have not yet done nerve conduction tests. The neurological tests show deterioration of all the lower limb reflexes and right side weakness in the upper limbs, positive Romberg’s sign and major balance instability with eyes closed (and a little with eyes open). But all the MRI and CSF tests came back with no findings. I’m now exhausted and even more worried as there is no explanation for the symptoms.

Do they have a plan for you? Or a follow up for answers

They're going to give me nerve conduction tests as an outpatient but they don't expect to find anything as there were no indications from the MRI.

As far as i'm aware that's the only plan for now.

They can't figure out what's wrong so they're going to stop trying - or at least that's how it feels. I still can't feel my legs or my torso, my fingers and chunks of my arms.

It’s really not the end of the world. The drug treatments are really effective now. I’ve had over ten years of stability. Having issues again but there are many more treatments available than there was when I had my last treatment. I still work full time as a nurse on a very busy ward.

It’s outrageous that they’re going to just leave you with those symptoms - have they offered no alternative potential diagnosis at all? I’d go back to the GP sooner rather than later if that’s the case. You’ll have to push.

My husband is recently diagnosed with MS. The lumber puncher was the test that confirmed his condition.
Did you know there are 3 types of MS one you can lead a relatively 'normal life,' one where you get good days and bad days and one called Primary Progressive where you steadily get worse.
I hope you get answers soon as I know how hard it is to wait for the diagnosis.