Went for neuro appointment this morning following bladder problems earlier in the year.
He asked about all my other symptoms etc and is sending me for MRI of head and full spine. Only had head MRI last Dec (after ON in Oct), which showed several lesions.
He said that he thinks it is almost certainly MS, but wants the scans to be sure.
I feel completely shell-shocked and sick. I was thinking it, but I don’t think I was prepared to hear it.
Feel a bit numb since appt (no pun intended!).
I know it’s good to get progress and that he’s taking me seriously, but this morning I couldn’t give a fig about that. This morning I feel drained and upset and lost.
Don’t be sorry for a miserable post - this situation is miserable
I can’t offer much, i’m awaiting some answers for my husband, but i can offer the advise of taking control. We’re 6 months into no diagnosis (but lots of, “well its not xyz”) and I have to fight to get help. If you’re not up to fighting see if you can get someone to do it for you.
I had a simillar appointment going back about a year ago now. I was very shocked at what the doctor said, since then I have had a MRI and a lumbar puncture and still only have a “likely/ possible MS” tag.
Well the good news is that the neuro is clearly taking this very seriously. You’ll see from loads of posts that doesn’t happen often, so breath a sigh of releif that you have got yourself a good neuro
I understand the prospect of having MS is scary and depressing and although we many of us would not be surprised by the diagnosis, it still copmes as a shock when someone actually says it. My GP came out and said it to me recently and has written a letter to another neuro stating he strongly suspects MS, i’m really glad he’s doing that but when he actaully said it I was quite shocked.
You may be in “possible/probabale MS” status for a while, but having a good Neuro will really help as he will keep on top of things and most likely book more tests as and when needed.
HAving been part of this forum for about a year now I have learned that most people seem to know deep down they MS, and even for those who take a very long time to get a diagnosis they usually tun out to be right. Git instincy I guess, we are know our bodies better than anyone else.
Just hang in there hun, whatever the outcome, you will come to terms with it. And stay with the forum, the support people give here is fantastic, I certainly would be lost without it!
Thank you all for your replies. I am very fortunate to have a good neuro. He is also generally kind and has a good bedside manner, which is comforting. I suppose I was most shocked this morning because he was talking about me having MS with such certainty. I suppose the two distinct ‘episodes’ I have had under his care, and the existing brain lesions, means one more distinct lesion in a different area would be the last piece of the puzzle in terms of diagnostic criteria. Whether it will be enough for him to diagnose on is another story. More wait-and-see for me now. At least I have had an MRI before and know what to expect. Thanks again for your replies xx
Hi Pandagal, I’m sorry to hear that you may be Dxed soon with MS. It’s normal to feel like you are feeling I think - no matter how much you think beforehand you may have it, it’s not the same as hearing someone else talk so definitely about it. I felt the same after my recent appt, the neuro was sure I had MS - she said “you get a feel for these things, and I will be surprised if it’s not”. At first I felt elated that I was being believed, and then devastated. Time is a great healer, and now I am mainly OK again (though not a very patient patient waiting for the MRI scan). Life will go on, as you adapt to this news, but in the meantime (((((Pandagal))))) Leah
I feel a little calmer today. My mum left work at lunchtime yesterday to come and sit with me and chat about it. I can tell she is upset but putting on a brave face for me.
My husband says he is ok. I can’t work out if he is being super rational and positive, or if he is just covering up how he really feels to protect me.
Unfortunately, I think it’s unavoidable that over the next couple of months, I will be able to think about little else. I should hopefully get my MRI appointment through for some time in the next 3-4 weeks, and my follow up neuro appointment is already booked for 4th June (which, although I KNOW is actually very quick for a neuro appt) feels like forever away.
I too am not a patient patient. But I am also a little hesitant now as the fear sets in.
Thank you all for your support, I so appreciate it. Leah - I hope you get the answers you need soon. Poll, I am sorry to hear how long you have been suffering. Do you have a DX now? Are you still in limboland? I hope not.
I am sorry that you are having a horrid time, PG. I remember that feeling so well, and there is just absolutely nothing funny about it. Hang on in there.
