I have been under investigation for MS since end of April, I have had MRI and carotid scans, my symptons are: double vision, dizziness, weakness to my left side, tingling hands and feet and i am just recovering from my 2nd bout of optic neuritus.
I was in hospital last week for steroid treatment for O.N, whilst in there, i read through my notes, its says i have ‘multiple high-signal intensity lesions in the deep white matter and subependymal surface in keeping with MS’ and ‘sutble faint lesions in the posterior fossa and brachium pontis’
My sister has MS and although we are told its not hereditary, im very very worried/scared/nervous etc, my sister cant work due to being disabled, I have to work full time and i have 5 kids to look after too!!
I have a follow up appointment with a consultant neurologist and specialist in MS in september and have to go for visual evoked potentials at Charring Cross Hospital in a few weeks time
Im 99% certain its MS
Any advice or thoughts please
Hi Tracy, and welcome to the site
There is still a chance that it is something else, but your symptoms and MRI report definitely support an MS diagnosis. Sorry.
MS is not hereditary, but genetics do play a role and the fact that your sister has MS did increase your chances of also getting it. It’s probably more for siblings too simply because they also grow up in the same environment and are exposed to the same risk factors.
HOWEVER, the severity or type of your sister’s MS has no bearing on what your MS will be like. It’s a weird fact that your chances of getting MS are increased when there is MS in the family, but there is no relationship of what that MS is like between family members. So, your sister being unable to work does not mean that you will be the same.
The other thing to take hope from is that there are many more meds available these days which can reduce relapse rates and slow progression. If you are seeing someone at Charing Cross, then you are likely to be seeing someone who knows their stuff (my neuro has clinics there and he’s an excellent MS specialist and one of several there) and who has access to the best meds.
So, yes, it may well be MS, but please don’t despair. New meds and better support these days mean that many MSers do much better these days. MS really isn’t the end of the world. Life can still be good - promise.
I am seeing Dr Nicholas, I think he does clinics at Charing as well as my local hospital, I just want to know whats wrong with me and get some treatment, its taken 4 months so far and Im still in limbo as to what is wrong, my GP has written to the hospital to try and speed things up for me as she thinks its unacceptable to be waiting this long to find out…
Dr Nicholas has a wonderful reputation. He is really lovely and caring. You are in brilliant hands.
Try not to worry - he will help.
Thought I would just comment on Dr Nicholas - I’m under him at the moment and he is fantastic so I second what rizzo said. I’ve been waiting since April for my tests so it’s good news that you’ve got a date through already for some tests. I know it’s hard but try not to despair and also take comfort in the fact that Dr Nicholas is very good at what he does so you’re in fantastic hands
Im off to Charing Cross today for ’ Visual Evoked Potentials’ Bit worried!!!
Will i get a result today or will i have to wait till September when i see Dr Nicholas?
VEPs are completely painless, so don’t worry at all. Sometimes the person doing it gives a hint about results, but not always so you may have to wait.
The worst thing about going to Charing Cross is the journey, and parking!
I’m off to charging cross on Tuesday next week for lumbar puncture and then Wednesday the week after for VEP and SSEP tests. I’m betting I need to take out a loan to over the parking costs!
The parkings terrible. I tubed it yesterday but its not too bad for me as I work in central london and live in Richmond so its sort of on my way home with only a slight detour. I even got a seat
1 More week till i know for sure whats going on, …although im currently ‘‘in a relapse’’ and signed off for due to my right side having left me!
Getting closer to knowing!
thanks for all your support
All the best,hang in there.
You know that we will all be here whatever the result and however you take it.
Hi there I was wondering if someone could help me? I wanted to know that if I am suffering with visual difficulties, I have double vision and prisms in my glasses, but yesterday the hospital said that my eyes have been given the all clear. Is it still a possibility that you can have MS if you are not diagnosed with an eye problem? Kind Regards Jaxy
Yes, eye problems esp ON can be the first sign of MS, but not everyone gets them, some do go on to get ON later on after Dx. My sister was Dx with RRMS in 1996 and has never had MS related eye problems, only age related ones!
I am in complete dis pare to be honest, I know my body better than any doctor, and since I had a major spinal operation in 2010 and it resulted in a trip back to theatre due to an infection in the wound, I have not recovered and seemed to have gone from a very fit and healthy young woman, size 8-10 to someone whom has been diagnosed and many times mis diagnosed with many conditions. I feel like a complete guinea pig. I never feel well, I am now up to a size 22 with very little mobility due to pain and just various other complaints. And although I have been diagnosed with the following, my new gp has referred me to see a new Rhumatoligist to see if…well what I’m not sure of? Every medical proffesssional has a different medical opinion and every department from Rhumatology, Spinal, Pain Management etc seem to want to have different ideas on how to treat me, or how they want me to deal with it, some tell me not to give up looking for answers and others have told me to stop searching for answers and just accept my diagnosis and learn to live with my new life and limited abilities. My husband and I think that my symptoms seem to fit with MS but I don’t understand why the medical professionals are so, I’m not even sure how to describe this…willing to consider the matter, I have recently been put on disease modifying drugs because my prior Rhumatoligist thought I had been on them for over a year anyway??? And I feel that they helped at first but have now stopped working, but whilst discussing with a friend of mine (who is not considered to have ms) abou the drugs she was on “Methotrexate and Plaquil?” She told me what a difference they have made to her, I think I may have MS and I think I read somewhere that an ms sufferer, had been put on that treatment, and that it had made a difference to her ms, I don’t understand why if the doctors could just be more open to the possibility that it could be MS, and try me on a treatment that instead of being on nothing and having no improvement what if it is MS and there is a treatment out there that could make a big difference to me? Can anyone offer me any advice please, because I really am fed up? Kind Regards Jaxy
I’ve never heard of the drugs your friend is taking. They are certainly not approved disease modifying drugs (DMDs) for MS. What DMD have you been prescribed? MS DMDs can only be prescribed by registered neurologists to people who meet certain criteria. Their primary job is to reduce relapse rates so they are only prescribed for people who have relapses. They are preventative meds rather than curative - so most have no effect on existing symptoms. The reason that DMDs are not prescribed without a diagnosis is that they are horribly expensive - and they don’t work on non-MS conditions so there is no way that the NHS can afford to give them to anyone. You talk about lots of specialists in your post - have you seen a neurologist and had an MRI? If you haven’t, then this is what you need to do. Without a neurology opinion, you will never know! However, please keep an open mind. MS can cause literally every kind of neurological symptom so it is the first thing that comes up on google when people put their symptoms in. You can even have people with every possible MS symptom who do not have MS! There are literally hundreds of things that mimic MS too. I hope you get an answer soon. Karen x PS It’s best to start a new thread if you want to get a decent number of replies.