Forum

Fed up of waiting

I’m 22 equine nurse, I’ve been having on going investigation at the JR in Oxford! I had a face drop and twitching to the right side of my face over 6 months ago, with bad head aches. I had a MRI scan that came back with some white spots! They then done a evoked potenial test with came back with changes to the brain waves with no delays! I then had a CSF tap which was clear! I have started to have sharp pain done my left arm and numbness to my toes and fingers with pins and needles. I’ve just had my second MRI with contrast and awaiting the results. I’m really struggling with this waiting game as a lot of my symptoms say ms, I would live to hear people view Thanks Amy x

Hi Amy,

I can’t really tell you if your symptoms are MS or not, but I thought someone should reply to this! Limbo is the worst state to be in. I’ve now been diagnosed, but, strangely, I have been feeling much better (admittedly, partly because I was high on cortisone), because at least I finally have an answer! The waiting around was so much worse than anything else (at least so far).

Really, all you can do is try to think of something else - I know this is difficult, I used to wake up in the middle of the night and then check if my legs are still working. This is even made worse by the fact that there is no way to self-diagnose because MS symptoms are so different for everyone (because it’s very unlikely that two people have lesions in exactly the same place). So allow yourself to be impatient, sad, angry and to eat lots of chocolate. Limbo is a horrible state, so it’s important not to be too strict with yourself and find a way to relax. I know that’s easier said than done, but if there ever was a moment to be kind to yourself and treat yourself, this is it. I sincerely hope you feel better soon and get some answers!

Best,

mj

10 weeks waiting after the lumbar puncture and evoked potential tests - is that normal?..think I’m suffering from a modicum of depression - am perpetually down and its affecting my family :frowning:

Waiting for a diagnosis is awful. I am at this stage at the moment. I agree that no hasty diagnosis should be made but why does it take so long!!! I had a copy of the letter from the consultant to the GP before my consultation and this letter discussed the findings of the MRI (nothing) and this plunged me into a state of anger and confusion. (So much that I had to take myself off for a few day to be alone). I just want to know what is happening to me. Start to feel that it is in your head!! Despite the very obvious physical characteristics. I have to wait now for a nerve test is this the evoked potential test? I agree with mj. Be kind to yourself and try and take your mind of ‘it’, whatever ‘it’ may be. Yvette x