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
Hi Susie, there will always be people around to chat with you on here, you probably have loads of questions! From reading what you’ve written your prognosis sounds very good if your neuro only wants to see you yearly, but make full use of your MS nurse, they’re worth their weight in gold!
The medication your neuro mentioned will be probably some sort of DMD (Disease Modifying Drug) might be an idea to read up on these so that if they’re ever needed you wouldn’t find them confusing…but that may be a long way off yet!
My two son’s are 36yrs & 33yrs now, but I do understand how difficult it can be to explain to your children. There’s leaflets about this that you can get from the MS Society & also there’ll be a lot of information you’ll get from chatting to people going through the same as you on here.
Please don’t worry about asking for support, we all need support sometimes
Thank you very much for replying Rosina, you’re right, I have loads of questions. Am sure most of them are not relevant yet and it’s nice to know that there is support there when I need it.
My initial concerns are how long it normally takes for a referal to an MS nurse to happen, I’m guessing that it depends on the area.
Also, I have been off work for about 3 months now due to having completely unrelated surgery but also because work became convinced that I was suffering stress and eventually you start to believe it yourself so the doctor signed me off until surgery was completed and I had a diagnosis from the neuro (my GP was expecting MS too). I am due to go back in 2 1/2 weeks and know that I only get one chance to “go back” and show that I am to all intents and purposes fine. Does anyone have any advice as to how to approach this. I have noticed a tendency from some friends to assume that I will give up my job or go part time which I have absolutely no intention of doing and am concerned work will assume I can’t do my job and write me off.
Again, thanks for replying and thank you to anyone who reads this
I think it varies in how long you’ll have to wait to see an MS nurse, if you’ve waited more than four weeks it might be a good idea to speak to your neuro’s secretary, he/she might need a nudge.
About your work…if you’re able to continue with the work & feel well enough to & your employer is happy, then I don’t see any reason why you shouldn’t. Others shouldn’t assume you’ll be giving up work, only you know if you can manage or not!
I was diagnosed in March this year and have returned to work full-time.
My MS Consultant suspects I have progressive MS but we need to wait and see, I am 39.
Why do you think you only have one chance to go back to work? Are you aware that if you tell your employer you have MS you become protected under the disability equality act. Your work place are expected to make reasonable adjustments to your conditions. The MS Trust have a great information pack about MS and work. The thing stressed is don’t make decisions to drop hours or stop work if your only just diagnosed.
I used to do 11.5hr shifts I now do 6hr ones but do some longer days still where I do half clinically (I’m a nurse) and half in the office/ a classroom otherwise I’d never have a day off.
Thank you Rosina, I’ll give it another week and then speak to the neurologists secretary like you suggested
Thank you for replying. I guess I have sort of felt that I have to prove that nothing has changed work wise or my career is over, and that I can still do my job (I’m a teacher) but I appreciate the information about the pack, I will have a look at it because like you, it’s normal for me to work 11 or 12 hour days.
I am going back on a phased return which I hope will help