I don't know what's happening

Hi all,

I’ll try and keep this brief

This is my first post, I’m not yet officially diagnosed but my neurologist seems pretty sure I have ms.

It all started about 4 years ago with double vision, numbness and trouble walking…all of which pretty much went away.

I had a another Mri recently which showed no change…just the two lesions from the first Mri , even though I’ve been getting slowly worse this past year …walking getting bad, loss of balance , numbness and now my arms are getting weak.

The last few weeks especially I seem to have gotten worse, today I feel weak all over. My legs and arms feel really weak and I’m struggling to sit up straight and struggling to hold my head up.

To be honest I’m absolutely terrified. Could this be a relapse? Should I be doing anything ? I’m not due to see my consultant for another 6 weeks. I feel like I’ve just been left to get on with it.

Any advice would be greatly appreciated…I’m absolutely worried sick


I think it would be a good idea for you to phone your consultant’s secretary after the Bank Holiday and explain your situation, asking whether you can get to see him/her sooner.

It would also be good to keep a careful note of what is going on and when.

Finally, it might be worth flagging up your current troubles with your GP so that, whether you get to see the neuro early or not, there is a formal record on your notes from another doctor. Given how little store some of them set by evidence recorded only by civilians, this can be worthwhile even if the GP (as is fairly typical) doesn’t want to touch anything neurological with a barge-pole once a person is formally under the care of a Consultant Neurologist.

Try not to panic. Whatever is or isn’t the matter, it is as it is, and there is nothing you can do to make things better or worse - except for making yourself ill with worry.


The first thing you know is head to your doctor for consultation or you must be admitted for several days in order to monitor everything what you have feelin’. You really need an extra care for your doctor because it dangerous. I hope you do it.

Thank you all for the replies and advice.

I’m going to try and see my GP as soon as possible , I don’t have an ms nurse but I’ll ring my consultants secretary tomorrow. I’m not holding out much hope regarding getting to see him any sooner as they’ve already brought the appointment forward…I wasn’t originally meant to see him until September but my GP asked if they could see me sooner. I’m lucky in that I have a very supportive GP.

Today I ordered my first walker…it’s scary how quickly I’m getting worse. Two years ago I was walking the dog for miles and now I’m looking at wheelchairs.

I’m trying not to worry so much… I really wish I had an ms nurse or even a diagnosis so I could maybe start treatment.