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Waiting

Hi ! I am new today as its finally beginning to sink in now that I have relapsing/remitting M.S. Im sorry to hear so many of you are still waiting for a diagnosis ! That must be hard !

I had pnumonia and an undiagnosed first ‘episode’ in November '11, and was admitted to hospital 2 weeks later where an MRI showed multiple lesions, and I was given i.v steroids over 3 days.I had another episode 2 weeks later and now have the diagnosis ! However if I was scared before… im terrified now that its starting to sink in as I have skipped the consultant led care and gone straight to professor led MS care as theyre not sure on the severity due to a ‘very severe first episode’ !

Second MRI has been done, masses of blood taken, now just hanging on for a lumber puncture and neurophysiology ?? Once these tests are done they want me on disease modifying drug therapies, but like I said they want to see all test results beforehand to see what were dealing with !

I think im starting to come out of the feeling sorry for myself part { do still slip some days though } and im starting to feel angry and lonely…is this kind of normal ?

Sorry if ive blabbered on…Nella

Hi Nella, and welcome to the site

It’s really normal for emotions to be all over the place in the first year or two (and occasionally later on too!), so yes, feeling angry & lonely is perfectly normal. At least you know you don’t have to be completely on your own, now you’ve found us!

Try not to worry too much about who you are seeing or even the fact that your first attack was a bad one. MS is incredibly unpredictable - the past can be a guide to the future, but it is absolutely not written in stone. For example, one of my best friend’s first attack had her hospitalised for months - she even had to learn how to walk again with long sessions of physio every day - but years later she has really mild MS and can walk for miles! Even if it’s looking like your MS is more aggressive, there are some really good drugs available now to help reduce the number of attacks we have, as well as to help us manage our symptoms.

Have a look at the msdecisions website to find out more about disease modifying drugs (DMDs) - it’s full of usefull information.

I hope the results don’t take too long - waiting sucks!

Karen x

Hi Nella Welcome. Karen has given you great advice (as usual) but I just wanted to reassure you that what you are feeling is perfectly normal. I was only diagnosed myself about a month ago (but saw it coming for a while before that) and understand how you feel. Getting a diagnosis like this is akin to a bereavement. You have lost someone, yourself or the person you used to be. I can relate really well to the loneliness as your loved ones can never really understand how you feel as they are not in the same situation. But we are and we really do empathise with you. Stay in touch with us on here and let us know how you are. Thinking of you, Teresa xx

Hi Nella, I am new here today too and must of posted same time as you!!! I have little advice as am right at the beginning of all this but totally understand how scared you feel. I have also been seen quickly and referred straight to the top neurologist and it scares me so much that they seem to be taking it all so seriously. I should be pleased but just feel petrified about what they know and I dont…

Sorry not a very positive reply.

Hi again,

Thank you so much for the replies… Is really nice to find people who have seen and heard more about MS than me but also nice to hear from Vicky3535 who is going through the same as me at the moment too ! We should keep in touch and compare notes ?? :slight_smile: Thankyou again all

Nella xx

I would like that too. I will keep an eye out on here for you.