Hi everyone I’m new to this so please bare with we, I find out on the soon if I have MS but my neurologist is 99% sure I have it, I have inflammatory changes in the left frontal cortex and in the cerebral hemispheres and brain stem, I also have inflammatory lesions in the right cord at T2,T11 and the conus of T12 I also have numbness/pins and needles in my right leg from my hip to my toes, to be honest I don’t know much about this as I’m too scared to look on line as I know I will scare myself silly, does anyone have advice on what I need to do next, I’ve done nothing yet, we’ll I’ve spoken to my work who are understanding and have been great, who do I need to tell etc…I’m sorry about this my head is all over the place at the minute - I know I will get through this and one day I will be more positive!
Hello Penlo, Welcome to the site. I’m sorry to hear you are having symptoms and that your neurologist suspects MS. I’m not sure how long you have been having symptoms but diagnosis often takes a long time. If it if MS there are disease modifying drugs (DMDs) that can slow down the progression. It is up to you whether or not you inform people in order to get reasonable adjustments put into place if you want to continue employment. Employers have a duty to put reasonable adjusts in place to support you. Again if it is MS you need to inform the DVLA and they will supply you with a medical license every 3 years if you are able to carry on driving.
MS is different for people I have spinal lesions C2-C6 and am now in a wheelchair but I’ve had MS since childhood and am retired now and have only been in a wheelchair for the last 12 years. Before that my symptoms were such that I held down a full time job, had children, climbed mountains and travelled throughout the world. I guess what I am trying to say is don’t panic and if it is MS then a good life is still possible.
You don’t need to inform anyone until you have a firm diagnosis and then after that it’s up to you who you want to inform to get support. It is a legal requirement to inform the DVLA once you have the MS diagnosis though. This is for your safety and the safety of other road users.
You will find great support on this site from people who have a wealth of knowledge to help you.
Mx
Hi it’s been 6weeks, I had a fall - I kicked a kerb and went flying and that seems to have made this all come out, I don’t drive as I have problems with my knees away, thank you so much for your kind words, I think it’s the term MS that has scared me the most as I don’t know much about it, I know a few people who has it and they are really bad, I’m hoping to carry on as much as possible while I can, I’m only 37 and I have 1 child, I’m hoping to have another one but now I’m not so sure, my boy is only 7! X
was saying this the other day MS strikes fear in many hearts, just the M.S.
I have friends with RA, and lupus, who fair far worse then i ever did. One is on a drug for her RA for cancer and its working and she is feeling better, we have DMDS and some people with MS go years without much stuff going on.
OK i thought many times I was going to get my diagnosis finally, and was told we cant be sure, and waited over 16 years lol.
You are relatively young have a whole life ahead of you, do not write yourself off yet. Like Theorising said WAIT until you get the diagnosis in writing before you tell anyone.
in the meantime read up all you can about the effects of it on our life. I must admit i have turned into a healthy eater, and i only eat what i need for my life style.
for now just try and chill and enjoy your child, lots of good things ahead of you yet. xxx
TO BE HONEST…if i hadnt got MS i think i would have had a stroke as my job was crazy and i had blood pressure in critical area lol. once MS decided to visit i had to eventually leave work, and my BP went right down to manageable lol. xxxxx
Hello Penlo, sorry to hear about your (probable) MS… You did not mention your energy levels severely going down at times?, called ‘fatigue’… I am 58 now (what?!.., I have memory issues too…) and I think I have had problems since my teens, BUT was only diagnosed when I was early forties… I had to stop working, mainly because of the fatigue, but I can still ‘walk’ (with the help of surrounding walls, a ‘stick’, and an automatic wheelchair for the holidays, although a break in Spain has been ‘delayed’, probably for another year…) and still ‘live my life’… ‘MS’ is unpredictable and different for everyone, just live your life and take it as it comes… (for as far as possible in today’s world…). Now…, when is the next football match?.., take care.
Hi Penlo - I am worried that I have MS also and am wanting to get to the bottom of things…if that is possible. So I was wondering if you could help me out? When you say ‘I find out soon’ what tests have you had to find this out? What is your Neurologist using as his basis for being 99% sure?
Thanks for any reply.
Hi I had an MRI from head to the bottom of my spine that showed I lesions on my spine and inflammation of the spine, I also have inflammatory changes on my left frontal cortex, brain stem and cerebral hemispheres, I went to A&E as I spoke to my GP and said that I felt unwell, I get the urge to go the toilet but I don’t feel anything (sorry for details) but the GP said this is a very worrying sign and I needed to get checked straight away!! On my MRI it showed changes that looks like MS changes, I had a lumbar puncture as well but my results are not back yet, Ask your GP for a MRI from head to the bottom of your spine, if your worries speak to them as well, my GP has been fantastic!!
I’ve just come out of hospital last night as I had a flare up and my speech and sight have now been effected and I’m really unsteady on my feet! Don’t ignore things if your worried speak to your GP straight away!
Hope this helps good luck,
If you need to chat please do, I totally understand how scary and frustrating it is!!