Hello (35f) I am not diagnosed with MS nor did I ever think I would end up here but here we are.
Had an MRI in Feb (ENT referred in June 25) due to one sided hearing loss, dizzyness and balence issues. Last month I had a really bad migraine and drs had actually sent me to a&e. Was told my mri results from Feb (no idea why it took so long) but lesions were found and was told could be migraine related but needed investigating.
I have the exact wording on the report if anyone can make sense of it, I can post that too.
Fast forward to now
I had a lumbar Puncture yesterday, it went really well I’m just tired and sore, But I’m just really overwhelmed right now.
I also have another MRI next month.
I’ve been suffering with internal vibrations, like my whole body is shivering almost but noone can see it. This has been going on for the past two weeks along with achy/heavy legs and extreme fatigue. I have a whole list of symptoms but these are most recent. If I’m honest, I don’t know a whole lot about ms (slowly learning from this site 
) so I’m unsure if these are even related or not I’m just stuck in limbo and feel like I’m going insane.
I don’t know how to stop it, it’s awful.
Anyway, I’m here for some support really as I have noone to talk to about all this. I’m really scared and upset I just want it all to disappear. Thank you
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I’m sorry you’re feeling so overwhelmed right now. Obviously reading up on MS is a sensible thing to do, but do please remember that not everyone gets all the symptoms that are mentioned. I know exactly how you are feeling with the internal shivering or shaking. You feel like others must be able to see it but it’s not actually visible to anyone. Also the heavy legs and tiredness. If you are eventually diagnosed with MS there are now many disease-modifying drugs (DMDs) available to help you and these days people can live a reasonably normal life with their help. I’ve had MS now for over 39 years and there weren’t any DMDs around or if there were a postcode lottery operated so I’ve never had any. It is natural to feel overwhelmed by all that is going on in your body over which you feel you have no control, but if you do get an MS diagnosis, you can then fight back with one of the drugs. My advice to you is how I have always lived with it. Don’t give in to it, always fight it as much as you can. There will be times if you have a bad relapse when it feels like you’ve lost, but fight back when things pick up. I hope this helps you put things into a bit of perspective, but these forums can be a good source of support. Take care
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Hi, welcome to the forum. It sounds like you have been through a lot in a short space of time, so it is completely understandable that you are feeling overwhelmed and frightened.
Being in that uncertain stage of having MRI findings, a lumbar puncture and further investigations can be particularly difficult because you don’t have clear answers yet. Try not to assume that every symptom means MS, as there can be different explanations for symptoms such as fatigue, dizziness, internal sensations and heavy legs. Your neurologist will be in the best position to interpret the MRI and lumbar puncture results together.
For now, be kind to yourself and give your body time to recover from the lumbar puncture. It may also help to keep a simple record of your symptoms, including when they occur, how long they last and anything that seems to make them better or worse. That can give your medical team something useful to work with at your next appointment.
Most importantly, you are not going insane. You’re dealing with a lot of uncertainty, and having somewhere to talk to people who understand that waiting period can make things feel a little less lonely. I hope your next MRI and appointments bring you some clearer answers and reassurance.
Crumbs, you are having a rough time of it. I’m glad that they are doing these investigations to find out what ails and what is to be done about it. I don’t think there’s anything for it but to grit your teeth and grind it out until they decide what’s the matter. The waiting is horrible as most of us on here know, and whether it’s MS or not in your case, it’s a strain and a frightening time. I hope you get some clarity soon.