Hello. I have been lurking on here since being diagnosed with relapsing remitting MS 3 weeks ago. I really just wanted to begin to interact with others in the same position as it is all new and strange.
It wasn’t an unexpected diagnosis but like a lot of people it has taken a fair old time to get here with misdiagnosis (possible stroke, migraine, anxiety, stress from work, depression) but fortunately I now have what seems to be a good supportive neurologist and a great GP. I realise from reading other’s posts that this may be unusual.
I’m a mum of 2, one who has just started secondary school and one who has just started primary school and my older one is not finding it easy to deal with this diagnosis (the power of the Internet and school friends at giving unhelpful information) and I don’t really know how to help her except answer her questions as best I can when she asks them. My youngest was an extremely premature baby (13 weeks early) so has ongoing health issues from that which has also massively affected my older one.
I feel a little bit strange asking for support as despite only just being diagnosed, it seems my last relapse was probably 2 years ago and I’m ok right now. There are no new lesions between MRI scans done this year and last year and my neurologist says it’s a clear and straightforward diagnosis from a clinical point of view, positive lumbar puncture, with hind sight 2 clear relapses affecting different parts of the nervous system (lost the ability to walk for a few weeks in the first one, and lost feeling in my face and upper right side and had real difficulty swallowing in the second one) and like, it seems a lot of people, ongoing tingling, pins and needles, balance issues, occasional speech problems and memory annoyances and tiredness, brisk reflexes, nstygmus? and loss of sensation. There are clear lesions on the MRI in my brain but not my spine and I’m definitely in remission.
My day to day symptoms are annoying but aren’t massively restricting me and at the moment my neurologist has said I don’t need any medication, if I have 2 relapses within a 2 year period then he will start medication (not really sure what), he is referring me to an MS nurse and as long as nothing changes will see me once a year so I feel like I shouldn’t be asking for support because I shouldn’t need any. There seem to be a lot of people in a lot worse position than me. But I’m scared and can’t really articulate all the reasons that I am scared on here because it would take too long!
I’m sorry for the long post, I guess what I’m really just looking for is people in the same position that I can talk with about things as they come up.
Thanks for reading