Hi I have just been diagnosed as highly likely to have MS. I have been back and forth to the doctors for a long time with leg spasms, burning sensations, brain fog … The list is endless! When finally I had optic neuritis they sent me for an MRI which shows significant demyelination, I have a high white blood cell count and the doctor had a long chat with me before refering me to a neurologist.
My Grandma had MS and was really brave and strong. A great role model. However after being calm and positive, yesterday I went to a wedding and held my baby girl and cried and cried. I feel devastated today. I feel like I’ve lost my identity and my future and also potentially ruined my daughter’s. To top things off I am pregnant with my second.
Is there any advice out there for this rollercoaster? I have been told to avoid stress, but it’s pretty impossible to!
Hi April . My sympathies to you. Everyone on this site will have experienced that shock of the diagnosis of MS and the overwhelming flood of different emotions. I hope the following is of some help and encouragement.
I fully recognise those feelings of lost identity and a lost future , and going through a period of grieving for those losses. When I was diagnosed I was single, with a well paid job/ career , owned my own house and thought I was relatively attractive to women. The sort of rosy picture I had of myself and my future all came crashing down in an instant! Very pleased to say that years later I am now happily married and relatively content with life ( could certainly do without the MS which does get me down at times but life isn’t too bad )
I know it’s going to be incredibly difficult waiting for the formal diagnosis ( which possibly won’t be MS) but use the time to learn as much as you can about MS and, personally, I would read the book and website of Overcoming MS - written by an Australian professor of medicine who has MS himself. Amongst other things he talks about Mindfulness, meditation, relaxation.
I tend to take a relatively positive view of the treatment of MS in the future . My guess is that in the event that your daughters do develop MS sometime in the future then treatments are improving all the time including for remyelination. When I was diagnosed some 18 years ago there was just one or two treatments, we now seem to have a steady increase in the numbers and in their efficacy. So, with luck MS in the future won’t be anything to worry about too much.
I know that every case is different but am happy to share my experience of MS. Diagnosed around 18 years ago after Optic Neuritis I didn’t experience anything much for maybe 5-7 years until one day, after walking around town for an hour or two I found my right leg wasn’t working properly. I now have problems with walking for more than 10-15 minutes, get periods of MS fatigue and annoyingly need to make sure that there is a toilet not too far away but otherwise I’m not too bad - on Saturday spent a couple of hours sawing up an old garden shed. As I say, every case is different but overall, after 18 years and at 70 years old my life isn’t too bad ( my wife and I are currently wondering whether to go on a cruise next year - somewhere not too hot as heat can be draining for those with MS).
MS certainly has changed my life but in general it’s not too bad.a
Hello @April2023 
First of all; give yourself time to feel what are feel. it is ok to be afraid and in sorrow. Trust on your circle of support; which includes loved ones; close friends; and medical professionals who may offer you personalised guidance and mental support.
Thank you so much for this. It gives me hope and perspective. I will be doing some reading and research so thank you for the recommendation x
Since your grandmother’s day, the world has changed in terms of treatments that can stop RRMS in its tracks for decades. If you do have MS, your MS will not be her MS.