Hi Emma, awful situation for you.
The problem is when the MRI is clear then it is usually a ‘wait and see’ situation. Many of your symptoms do sound MS-like… but there are other conditions that can cause very similar symptoms. As you know, there isn’t one single test for MS… they put a whole lot of pieces of info together to make a dx, and one of those pieces is MRI result.
I’m assuming they have done blood work? There are a few conditions that can be be detected in the blood… but I’m assuming you’ve had that done as would normally be first step.
It is possible sometimes that brain or/and spine lesions don’t show on the MRI scan. Some scanners, esp the older ones, are not good at showing lesions… also sometimes lesions ‘hide’ and do not show on the scan.
You could ask your GP for a referal to a different neuro or MS specialist (although there’s a good chance GP will say no… it now costs the GP practice money to refer). You could try going private and paying to see a neuro or MS specialist… but keep in mind that it might not lead to a dx. Or you could simply wait for a year and get another referal for scan. Believe me I know how depressing that must sound.
It is not that unusual to have MS symptoms and not be able to get a dx (as you will see on the 'waiting for dx and new dx board) but knowing that doesn’t make it easier.
The squeezing sensation you get round your middle does sound like what’s called ‘MS Hug’. I get it a lot. I’m copying and pasting a list of tips, at end of this, that will hopefully help.
Hope this helps and really hope you get some answers soon.
It’s a spasm of the small muscles between the ribs. Here are some tips that might help:
· Much worse in heat
· Much worse when fatigued or stressed
· Don’t wear a bra (it irritates the muscles)
· Don’t wear tight clothing… the looser the better
· Avoid large meals… little and often is better
· Lie down in/on bed if you can… and lying completely flat often helps
· Take 2 Paracetamol… if you are not on other pain med’s
· Try controlling your breathing… deep in through the nose and slowly blow out of mouth… and try and relax whole body while doing it
· Stay as cool as you can but don’t have cold shower… luke warm is better
· Rest, rest, rest and then get some more rest (if at all possible)
· Gently rub the affected area. It might feel like it’s bruised… don’t worry, that’s normal