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New here! Need advice about what I should do next.

Hello everyone. My symptoms started in 2007 when I was training as a Nurse. I started getting problems with my vision and feeling dizzy, put it down to stress. Was on a ward one day when my vision went very strange and the next thing I knew I came round in a bed. I had completely passed out, this had never happened before. The left hand side of my body was numb and i was slurring my words. They initially thought i’d had a stroke, which I hadn’t, and was sent home. A few months later I started getting pain and blurring in my right eye. I went to the optician who referred me straight to the eye a+e who confirmed I had Optic Neuritis. It took quite a while to clear up. Around this time I started to get numbness in my arms and legs, mainly my left hand side. I’ve also had severe migraine, and stabbing pain in the top of my head. I was referred to Neurologist, had an MRI and everything was clear. Symptoms have been pretty much constant since then, however I now have hot sweats and the most awful itching all over my body. My balance is quite off for me and I lose my words all the time. I recently saw the Neurologist again, had another MRI on brain and spine and it has come back as no significant abnormalities. I don’t understand what the difference is between clear and no significant abnormalities. I am waiting to hear back from the Neurologists secretary at the moment,. I just feel quite desperate at the moment, I’m at the end of my tether and am starting to think I must be imagining everything. Any advice you can offer me would be very gratefully taken.

Hi Mag, My symptoms are a wee bit similar to your own in the respect that it was initially thought i had had a stroke, but tests done afterwards showed stroke was unlikely and MRI findings were more in line with MS than stroke.

Strangely enough i done my nurse training in 2007 also.

I guess the best advice I can offer is to try and be patient. Having read a lot of the entries on here it seems an MS diagnosis can sometimes take a very long time even years, so I know thats easier said than done. Have you discussed how you are feeling with your GP? I’m fortunate enough to have an excellent GP and it really helps to talk to her about how i am feeling. This forum also really helps.

What you are feeling is very real to you so try not to think you are imagining everything, but also bear in mind that anxiety and stress can elevate symptoms and make you feel worse.

I don’t really know if I have been any help to you, but I hate to think of anyone feeling desperate or down, so big hugs from me xx

Thank you. I haven’t been back to my GP mainly because I never get to see the same person and my old GP retired about 6 months ago. I have a relatively stress free life and,luckily, a very supportive partner. Xx

Hi Laura, and welcome to the site :slight_smile:

“No significant abnormalities” could mean a multitude of things, but it does suggest that there is something there that wasn’t in the previous scan, and that makes it potentially significant. So I think the key thing about your latest MRI is what the differences are between it and the one you had done in 2007, and what they might mean - that’s certainly what I would be asking the neuro if I were you anyway.

A clear MRI does not rule out a neurological cause for your symptoms - lots of neurological conditions do not show on MRI. What it might be will probably take a while longer and more tests to work out though :frowning:

While MS is commonly associated with optic neuritis (ON), it is not the only cause - so do try and keep an open mind and keep pushing for answers: we can’t make ON up after all and you definitely didn’t imagine it!

I hope you get some news soon.

Karen x

Thank you Karen. Hopefully I will hear back from them soon, if not I shall call again as he has now discharged me. X

Hey, new here first comment. Not diagnosed but have been referred to neurology. My gp suspects ms but doesn’t want to commit to it he said. He examined me again today and said my reflexes in my legs seemed normal so not indicative of ms. Does this mean if you have normal reflexes then it can’t be ms? Just a bit confused and fed up and not really been getting anywhere. My gp consults the nhs website to read to me about fibromyalgia and ms then asks me What I think I have. Sorry it’s a bit of a rant just feeling a bit lost at the mo!

Hi welcome J3nny You will hear a lot of people on here say that only a neurologist can say that you have MS, which is true, I myself has not been diagnosed. Your doctor should send you to the neurologist for tests or to fibromyalgia specialist. As they are the experts in their field, you may have to wait a while for the appointments as they can be very busy. Also you can be at the start of MS and have not got to many demyelinating lesions, they like to have a few before they commit themselves, you will have a great deal of tests to rule out other illnesses as MS has many symptoms the same as different illnesses. I can’t say what you may have as I am not a doctor. Reading up on Google is not a good idea because the illnesses need to be ruled out by a neurologist also it can start slowly with a few symptoms that you don’t know about it. Or it can start really fast and have nasty symptoms. As MS is different for different people with different symptoms, that’s why it can take a long time. read up on this site and ask lots of questions there will be a lot of people who can answer any question that you may have.

Good luck Kay

Thanks for your reply, had a look n read lots on here and it’s been very helpful. I’m trying to just not worry about it and see what happens. I didn’t realise I’d had a lot of symptoms for years as I had dismissed them I dividually. What will be will be. Just have to wait it out.

J3nnyo

I think we all do that." oh it’s because I getting older" I’ve pulled a muscle, it’s the side effects of medication.

When really it’s MS, I am seeing my neurologist on Wednesday, I don’t know what will happen, he may diagnose me or that it’s not enough evidence and need more tests or it’s nothing.

I have my list ready to tell him, my mum is coming with me as I don’t want to go on my own this time. I will though get the results of the lumber puncture and blood tests, I haven’t had a second MRI yet but he does want me to have another one, maybe in the next few months and have to have another appointment with him.

People on this site are very friendly and will answer many questions that you may have. They can give you some good advice on many things not always to do with MS. We all have things that go wrong in our lives and need a little TLC, or a rant or a moan. They can tell you first hand what the medications are like or who to contact if you need to get money that you are eligible, also about keeping all your letters from doctors nurses, and keeping a symptom diary.

Good luck kay

I hope all goes well for you on Wednesday kay and you get some answers. I feel like a diagnosis would be a good thing so I know I’m not just imagining all this as sometimes it feels like it. I’m 32 and have a 3 year old daughter and I’m fed up not being able 2 do things with her. Maybe knowing what’s going on will make way for proper treatment and a better outlook on things. Can I ask how long u have been attending ur gp for with symptoms?

You have your hands full with your little one, they are so quick and get easily bored. You probably working full time and that is hard too, the pressure from work can be stressful as well because you have had a few days off and that doesn’t mean that you have other things to do when you get back from work.

Some of the people here are still working but some of them have reduced there hours to cope better, having diagnoses and have the law to back them up. I don’t know about that, I lost my job when I was ill with coeliac they were very good but I did have a lot of time off, before they let me go.

Kay