Waiting for a to be diagnosed

Hi everyone, I’m new here an this is my first post, I’m currently waiting to be diagnosed, ill start from the beginning, I have been unwell for a few years in total just little things but something everyday and constantly tired, docs done bloods and i was low on my ferritin and put tiredness down to having 2 children, before Xmas last year half of my face, right side, went numb no drooping, left if for a while and waited to see if it went, it didnt so I went docs and got referred for mri scan, which took A few months by this time Numbing had gone, anyway expected nothing to show but when I got results was told I “there’s something showing, there’s some swelling but it’s ever so little, it could be ms do you know what that is” i did of course but was in shock, also my sinus was very mucky and blocked so was told to steam twice a day… was sent for another scan, which again took months, when I got the results he said the swelling had grown… He looked surprised as if they hadn’t expected that, I said I haven’t been well for a long time, an there’s always something wrong, so we decided for me to keep a diary, he also said for me to not concentrate fully on just doing the diary and enjoy my children, that kind of made me worry and maybe over analyse that statement. Anyway since then iv really been feeling quite ill, been to docs this week as I have ear infection swollen glands and sore throat possibly reflux, she said to treat these things individually rather than link them to the possible ms. I just wanted to get some feedback really, as Its constantly on my mind and I don’t no what s happening… There’s some silly things I’d like to know, and would like to talk to someone who’s been through this journey… Iv probably missed some out though x

Hello there!

Welcome to the site. Youll find a mixed bunch of folk here, who will offer support, advice and ear (or should that be eyes?) in an effort to help you. Of course youre feeling overwhelmed by what`s going on…especially when you dont know why.

A lot of us feel exactly the same…bewildered and questioning our own bodies, which we thought we knew well.

Now about this swelling on your brain MRI…I am surprised your neuro isnt actively doing something to find out what is causing it.

There are other things going on too, which need investigating.

Not sure it sounds very MS like.But who knows? MS comes in many shapes and guises.

Dont know if I can help you further, but please message me privately if you prefer, but there`s no need to think your questions are silly.

I dont have MS, but spent many years with a highly possible PPMS diagnosis.

luv Pollx…

Hi, well I’m waiting for a further appointment to come through. My guess is thy know more than they are saying, I saw a diff neuro on 2nd appointment, I don’t know if its just the way they worded it as swelling that’s making me wonder because since reading up iv read that they call it white mater or liaisons or something. Something is obviously going on, I look like really ill an really dont care really not like me as I always make an effort, got body issues lol so what is that what you have I’m not familiar with the short names of illnesses, at least not yet… Thank you for getting back to me by the way. X

Hi, well I’m waiting for a further appointment to come through. My guess is thy know more than they are saying, I saw a diff neuro on 2nd appointment, I don’t know if its just the way they worded it as swelling that’s making me wonder because since reading up iv read that they call it white mater or liaisons or something. Something is obviously going on, I look like really ill an really dont care really not like me as I always make an effort, got body issues lol so what is that what you have I’m not familiar with the short names of illnesses, at least not yet… Thank you for getting back to me by the way. X

Hello and welcome to the site

It doesn’t sound like the medics are keeping you terribly well informed :frowning: They might think they are doing you a favour, but they really aren’t because all that tends to happen is that we start worrying about everything! So when you see the neuro next time, make sure and ask exactly what’s going on (and take someone with you - and extra pair of eyes and ears can be really helpful). It may turn out to be MS, but lots of other conditions have very similar symptoms and some of these are easily treated, so try and keep an open mind for now.

It sounds like you are feeling very down about everything (understandably), but while not making an effort with appearance is not going to make a big difference to your health, it’s important to do your best for your body - so please try and eat the right things, keep fit and rest lots.

I hope you get some answers very soon.

Karen x

Hi, thanks for your post, well I’m pretty convinced that it is ms deep down, as I have nearly all the symptoms, ( didnt go into them all in previous post) to be honest I think both times I went I wasn’t expecting what they said hence lack of questions on my part. I will be asking next time now iv had time to think… I’m quite a healthy person to be far, food wise and don’t smoke, only drink on occasions… My main issue at the moment I keep thinking is where is this swelling and what would happen if I got a bang to the head… I haven’t told anyone apart from my mum and dad, but people do keep wondering why I’m never feeling well and complaining, some people army to understanding, also why I haven’t said anything untill I know anything for sure… X