Just been told I may have MS

HI - I’m a 37 yr old mum of 2 9 year olds, in process of moving house. Am posting on here really to get a few things off my chest and to say things I can’t really verbalise to my family/fiends. Please bear with me… Lost the feeling of “normal” sensation from the waist down about two months ago and GP suspected I had Guillain-Barré syndrome and referred me to infectious diseases clinic. After numerous test and blood being taken they sent me for a spinal MRI. In the meantime I was seen by the head of the department who reviewed my files and checked me over and pulled up notes from a previous scan I had had on referral a year ago from the optician. (an orbital MRI). At the time I was told by opthalmologist that there was nothing to be concerned about. Now the Professor in charge of infectious diseases (who used to work in neurology) told me that there were some legions on that Orbital MRI suggesting that I may have MS. He has referred me back to GP who referred me to neurology and told me that the opthalmologist had sent a letter to GP last year suggesting that he look further into the results of my scan (but the GP did not act upon this for some reason). After a few apologies and assurances that they will be looking into that further, the doctor called me at work on Thursday with the results of my spinal MRI - which are consistant with the orbital one and, along with the “loss of sensation” are further suggestions of MS. Now my hands feel the same way as the bottom half of my body and I have to go to the toilet twice as often as before, also am getting really tired when I wouldn’t normally - so my GP is trying to bring my appointment with Neurologist forward (it is, at present 30th NOv). I am a bit scared about what is to come (or maybe isn’t to come) but also aware that things could be a lot worse. I am having a battle with myself as to whether to be worried or not and I don’t want to make a fuss with my family/friends…so trying to remain positive even though inside i am not… I have been looking around for promotion at work (to be a primary school deputy head) but am now worried that, if I have MS, I won’t be able to do the job justice. I know the right thing to do is to just put things on hold for a while until I at least get a diagnosis… but from what I have read it seems it could take years. I know that if I had MS, it would not be the end of the world and I realise that there are people in worse positions than I. Any advice, or words of wisdom would greatly help me. Thanks

Thankyou H for your advice - It helps to know that there is life after a diagnosis and that it is normal to have “that sinking feeling”. Diet sleep and laughter… I could live with that. Thanks again x

Quick one before you move; have you got ‘critical illness’ insurance with your house. If you took this out before suspecting MS you could claim for probably the money to pay off your mortgage; if you are diagnosed. If however you move you will loose it all and no insurance company will insure you for the ‘CI’ part of your new house. Sorry darling; lot of ifs but you don’t want to loose thousands of £s. George

Hello, and welcome to the site :slight_smile: Looks like your GPs have a lot of explaining to do :frowning: Still, at least they are getting their act together now. By the sounds of things you are right bang smack in the middle of a relapse and you have had at least one before (your eyes). That, plus the lesions in two different places does suggest that you might have MS, but there are things that mimic MS so there’s no way of knowing for sure until a neuro can confirm what’s going on. I would imagine that the neuro might send you for a brain scan and do a few other tests, so be prepared for a wee bit of a wait, but I would be very surprised if it’s a long one. The important thing is that you will now be seeing the right specialist, and therefore will get access to the right treatment and meds. If it is MS? Well, there are never any guarantees, but many people with MS go on to achieve loads of things after diagnosis. It does tend to change our priorities and bring us challenges that we would rather not have, but for the vast majority of us, it is perfectly possible to live long, happy and fulfilled lives. My sister is deputy head in a primary school. She works appalling hours and is under a lot of stress. (She also loves it!) If you recover well from this relapse, then I would say go for it. You don’t have to tell anyone about your medical history or diagnosis if you don’t want to, and if at some time in the future you relapse again, then your head will have to support you through it and beyond it with any reasonable changes needed to allow you to continue to work. I do think you should think carefully about applying if this relapse leaves its toll. Long hours and a lot of stress are not great for neurological conditions :frowning: Saying that, one of my MS friends only retired this year from a difficult post in education and another one is still going strong in another very demanding teaching role - they are both in their late 50s and neither of them have “mild” MS. It’s hard, but it’s definitely not impossible! Please let us know what happens. Karen x

hello there! you sound like a very sensible lady and Im sure you are. Youre doing your utmost to remain calm and take it steady with neuro/diagnosis etc. That is commendable in itself…its really hard not to let your mind run away with you, I know! But yes, it can sometime take years to get a diagnosis......Im in my 14th year of it now and still not got a definite one! been told it is probable PPMS…I reckon it is too. had zillions of tests to rule other stuff out. don`t think i can tell you anything different than you are already telling yourself. Hang on in there, love. luv Pollx

Thanks for the kind words and advice everyone. You have already helped me to gain strength and understanding of my situation. THank goodness for forums such as these. Have a good weekend

Hi there I got diagnoised with ms back in march this year was a complete bolt out the bule for me too, never had a clue i had ms untill i lost my vision in my right eye, which has not returned. I was diagnosed striaght away after mri and lumpa puncher, it was i really shock but ive gone back to work and my life is starting to get back to normal, like yourself i have 2 young children a 5 yr old and a 15 month old baby, I find fatuige the hardest to manage. email me any time if you would like to chat