Looking for some support/advice - not yet diagnosed

Hello, I am new here and I am really hoping someone can offer some help, advice or support.

I was diagnosed with optic neuritis around 4 weeks ago which came out of the blue and rreally gave me a shock. I went to see the ophthalmologist who after a few days (as it worsened) decided totreat me with steroids which helped bring my vision back a little, although I do feel its worsening a little bit.

I started to develop weakness in my body and over the four weeks that have passed I have very weak legs with some burning/stabbing sensations in my arms and legs sporadically. I have had other symptoms too which I have listed below:

  • I get hot easily (though this seems to have calmed down a bit)
  • pins and needles in my feet and arms and sometimes face- I usually wake up with a completely dead arm (which has been happening over a year)
  • I have sore knees and feet (which looking back i have had around 2 years)
  • some dizziness which seems to have improved a little
  • pain in the centre of my back and previously in my tummy (like a band)
  • Now have a white patch on my tongue that matches the description of leukoplakia - which is linked with people who have compromised immune systems - hence suggesting MS. One website even said their are links.

The symptom I find the most distressing is the jelly legs - its making me feel worried when I am walking and feel like they wont support me properly.

It’s worth saying I am an incredibly anxious person and would be fair to say I’ve slipped into a dark depression over the few weeks.
I have week to wait for my MRI as the doctor saw me when I only had optic neuritis and no other symptoms so didn’t think I was high risk.

I’m so afraid, I know it takes a while to diagnose MS but really feel convinced I have it - especially due to the addition of the white patch on my tongue. I am 33 years old and was just about to start a family, have a brilliant job I love and a bright future ahead of me, I just cant get my head around this. I am also very scared its PPMS and not RRMS (due to weak legs) which I believe seems worse?

Any advice or words of support would be so welcome in this scary time xx

Hi Pippa, not surprised your very anxious and lots of the symptoms you describe could be ms. The trouble is they could be caused by many other things too, so the diagnosis process often takes time. I had my first relape in 2015 and it was a total shock with massive pins and needles in arms and legs, leg weakness and bladder problems as main symptoms and many others. I went from normal life to totally flooded In Space of a week. So I had lots of typical symptoms of ms but it still took 18 mths to get diagnosis of ms. Sounds like u are seeing right people as uv been referred for mri, it’s worth asking if there are any cancellation appointment s that could speed things up a little, but bear in mind that ms diagnosis is a long road that u don’t really want to get to the end of. There’s no one test that neurologist can use to decide and only they are qualified to make diagnosis. Some people will be told they have clinically isolated syndrome, CIS,first as I was, and then u wait and see if if u have another relapse or lesions found on a second mri after time passes. So at the moment, try not to assume the worst, look after yourself and take some time out to hopefully recover from your current symptoms, keep talking to your GP regularly about how things are progressing and if u have any new symptoms make sure they know. Try and stay calm, easy to say much harder to do as anxiety can be all consuming, but what can u do to take ur mind off it for at least a while to give ur brain a break from stress hormones watch daft TV or listen to podcasts maybe. Hope this helps a little and wishing u luck. Froo x

Hi Froo, Thanks so much for replying, I’m struggling to find people to talk to about it so I really appreciate you taking the time. I totally understand that it’s usually a long journey to diagnoses and you’re right in saying to try and distract my brain whilst I wait to see the doctor. It’s just so hard as I feel it’s constantly at the forefront of my thoughts and it’s so easy to go to the very worst scenario really quickly. My original appt was with the ophthalmology department and I have just checked my appt letter and it’s with the ophthalmologist again, so not even a neurologist. They weren’t aware of my other symptoms as they have come on since; I wonder if I should call to check in seeing there right people. Sorry just rambling out loud! Did your leg weakness go away once you went into remission? Thanks again- so lost and confused so appreciate anyone taking the time to talk. All the best Philippa xx

Hi, sounds like u do need appt with neurologist, opthalmologist should be able to refer u if ur seeing them soon otherwise ask your GP to refer u. Don’t worry about ppms just now, 85% of people with ms have rrms tho that definitely can come with walking issues. question what u read online, I totally freaked out when I read about ppms after my GP suggested I might have ms first time as read it was more likely if onset in ur 40s but that’s not how it turned out. My legs did recover pretty well after first relapse and I got back to most things, tho always have some lower level problems grumbling away like complete intolerance for heat. more recently I’ve had much bigger relapse really affecting my walking, 6 mths ago was only leaving house to goto Dr, can now make it to bus stop at end of road with a crutch. I do get massively frustrated and worried too but I’m so glad I’m lucky enough to have some improvement on where I was. The hardest thing about ms can be just not knowing what’s going to happen, it’s so different from One person to another and from one relapse to another. So I’m trying to go for not thinking too far ahead. Guess what I mean is try not to let the fear stop u living ur life now, it’s impossible to ignore but if u can manage to make it not the most important thing going on for an hour/day/week ur doing well. Froo x