hi everyone,

live got a letter from neuro, about MRI and evoked potentials, my MRI showed no signs of demyelation and my evoked potentials are within normal limits, so no Ms!! Which is fantastic news…

the search is still on for what is wrong with me so my journey is still ongoing.

if this group don’t mind if I find out what is wrong with me, could I possibly post on here as it might help others who have been through similar situation,

i would like to thank each and everyone of you for your continued support and kind messages and encouragement, you all have kept me going when things got tough…


i sincerely wish you all the best

kind regards

heidi x x

1 Like

Hi Heidi,

I am pleased for you that results so far DON’T support a diagnosis of MS.

I’m also pleased that you are pleased. I know people sometimes feel desperate for answers - any answers - which can lead to the impression they’re actually disappointed they don’t have MS!

But although it’s disappointing not to have answers, I think “no evidence of MS” is almost always good news. The “almost” is because of those few cases where it’s already been narrowed to MS or something nastier, so you’d rather it was MS. But for the vast majority, “not looking like MS” is always good news, and increases the chances it’s something with a better prognosis.

I’m also glad to see you’ve not interpreted the normal/negative test results as a personal slight - as if you were accused of imagining things or making them up. It doesn’t mean your symptoms aren’t believed - just that MS doesn’t fit the jigsaw.

If and when you do get answers, I’m sure it would be interesting to hear.

All too often, people disappear from the boards, and we assume it must be because they found it wasn’t MS - but we don’t always get an update on what it was.



Thank you Tina, I really do feel relief it’s not Ms, obviously I’m disappointed I haven’t got answers, but it another thing crossed of the list x

i also have felt not believed, which is hard to deal with, but it is also hard to get the "correct diagnosis " when symptoms are so random, so test after test and constantly being negative may be frustrating, but it’s also eliminating things, unfortunately that is the only way to get answers even though it’s long winded.

this process is an emotional roller coaster…test, worry, results (relief), then repeated.

my pain levels have increased stupidly in my back, legs and feet, I am near enough housebound, but I’m here, I’m alive, and even though in pain, I’m needed by my kids x

im a researcher and I have learnt so much through this journey, positivity is key, your up, your down, but when I’m having a bad day/week, I try and think tomorrow/ next week might be good x

i have dr’s appointment on 10th so I hope to update on next stage…,who knows the likelihood of someone suffering the same as me is highly probable, and maybe once I get a correct diagnosis I may in turn be able to help someone.

even though I haven’t got ms…I know how a lot of people feel as my symptoms experience is similar, the only thing I haven’t got is the MS life long diagnosis, which I do believe is a hard pill to swallow.

There is so many strong, and compassionate people on this group,who are diagnosed with MS, who give so much help and support to others, I find this truely humbling.

amazing group, strong, determined and loving people x

heidi x

Hi Heidi so glad you have your results and it is one thing crossed off the list on your long road I hope you can find something to help with your pain Suexx

Great news Heidi, it was the same for me :slight_smile: xx

Thank you sue x x it’s a big weight of my mind x x

Hi ya Hun, x x fantastic news, x x are you any closer to a diagnoses yet x x

Oh heidi i am so pleased its not ms for you thats wonderful news.Good luck with your ongoing journey hope they find out whats wrong very soon and i hope you get some pain managment for your pain.Wishing you all the best.x

Thank you sweetheart x x x