Hi, I today had a call from my neuro consultant at the hospital to inform me I jave MS my MRI results are back and fits the pattern of MS and is many more lesions then he expected and with my history he has referred to me the bigger neurological department at the bigger hospital ASAP to get the right support and treatments as his little clinic at local hopsital isnt much benefit.
I am quite a mess being told over phone and no answers about what happens next, i was prepared he did warn me he believed it was MS but also told me a MRI may not show it though he said due to pattern of my MRI its rather conclusive.
Over lasy six years i have had periods of pins n needles in arms hands n legs lasting from few days to weeks i never visited my GP as im a busy single mum n just thought my body was bieng odd. In Sept i woke one morning with severe painfull tight feeling pins and needles in left side of my body from my breast to my hip bone , it hurt more to touch and was rather odd wa sonly my left side i visited GP who said it was neuropathic pain and prob never know why, he gave me gabapentin which was useless this lasted for about three weeks, accomapnied with a tightening squeezing sensation around my chest. It was quite uncompfrtable and wd sometimes squeeze harder and felt like I was wearing a bra too tight even when i wasnt wearing one as was far too uncomfortable to put one on. Then i woke anothe rmorning the pins and needles had relieved after three weeks though still felt very tight like skin stretched n sensitve but pins and needles had came down to my left leg, very painful and in certain places in my left leg i became paralysed had no feeling and i couldnt walk. After few more weeks it got slightly better but appeared in my right leg though not as severe as it was once in my left, in dec the feelings finallyu went only leaving my feet tingly and numb which comes and goes. Also in oct i had a three week period of severe dizziness, everything spun all time and laying down i felt i wa son a boat it wa shorrible . Though im now steadier on my feet i stil lgo off balance and my hands have startted to sometimes shake mostly my right hand and i have to stop typing etc and it shakes alot i cant keep my hand steady, i am also suffering from slurred speach though not constant its coming and going.
I feel like a total diff person like i dont know whats happened to me and im so scarred more thigns will happen or the paralysis will come back. I live four hundred miles from my family alone with my two daughters who are both in primary school, any advice on what to expect or hpow to make it easier , Oh im female and 33, thank you for reading i know it slong tried to keep it short as possible
Do your parents know about this, if not ring them today and tell them what’s going on. I think you need some help. Look on this site or on the internet for a branch of the MS Society in the area where you live and ring them tomorrow. Somebody there will I am sure talk to you and get somebody to come and see you. You need a bit of help and reassurance from somewhere sooner than later.
Do not just try and deal with it on your own, find someone who knows what it is like and keep talking to them. I’m an old 57 year old, have had it 25 years and am still here. It’s not going to be a picnic but you will be able to deal with this. Remenber you have two little people that will help you get on with things as long as you keep them well aware of what is happening.
Good luck.
I am not much good for advice but wanted to send you a big ((( hug))) finding out over the phone is pants. Hopefully you have some friends who live close who you can’t rant with over coffee/cake/wine and who will be there for support. This forum seems a good place for advice too x
hiya…welcome so sorry to hear of your dx and over the phone…your neuro sounds proactive and perhaps he felt it was better to tell you over the phone than by letter…it’s. to the best way but It sounds like his intentions were well meant…and he wants you to be seen by a bigger team…and therefore you will get the support you need…if you know where you will be for this why not contact them for some advice now…am sure they will offer you some support over the phone… give yourself time to take it all in…don’t panic…don’t google it…lol even with a dx ms can be so different for each person…so it can be hard to predict…keep an eye on your symptoms…make a diary if it helps…am no expert at all but …be kind on yourself and take each day…one at a time…lots of support on here and you may find the everyday living section really helpful too… e
Hi Thank you all for yopur replies
Robin I have told my dad and sisters I have not told my mum and i am not going to tell her. I have a sister who is terminally ill and right now very sick at her worse I cant possibly put this on my mum on top of everything else, I can not give her more to worry about.I will contact my local MS society branch thank you.
Thank you Billie and scoobie, yeah I am hoping i dont have to wait for too long for this next appointment but I expect i will everything is long waits lol and i will call them thank you
Hello and welcome
Sorry to hear about your diagnosis…its quite a shock even if you are prepared. I was diagnosed last august…I’m 57. I too have multiple brain lesions but it doesn’t follow that if you have more lesions, that it will result in more problems. Its more about where the lesions are. Some people have only a couple of lesion but have many more problems.
I just try and take each day as it comes. I still manage to do all the same things, only a little bit different. We are all unique in our MS but similar…you will find lots of great people on here always happy to offer support.
I’m gad you have your dad and sisters supporting you. I can understand why you don’t wish to tell your mum. I’m so sorry to hear about you sister’s terminal illness…what a very sad time for you all.
Take care
Noreen x