please bear with me as I am at my wits end! I am looking for some advice as I have had a nightmare 6 months and wondered if anyone has had anything similar…
In August I went to A & E with a tight chest … It felt like I was being hugged but thought it was a heart attack! After lots of tests I was tested for Epstein Bar virus which tested positive and I showed high levels of anti bodies in my blood…
All of symptoms of fever have gone but I have been left with some very odd symptoms which have massively impacted my life…
Firstly chronic tiredness and a complete lack of motivation, simple daily tasks take a lot of effort and seem hard mentally a buzzing and numb feeling in my lower legs which at night turns to rampant itching which the more I itch the worse it gets ( with no sign of skin aggravation ). The feeling of urgently wanting the toilet ( I have had tests for this but all came back fine? ) and finally a complete adversion to bright lights ( if I look at a bright tv i can see a shadow of TV when I look away ) and occasional blurry moments…
I was a fit (played rugby) healthy 40 yr old full time worker and now feel so weak and depressed. All the tests for eyes , bladder etc have come back fine and am now pursuing doctor for more tests as I am off work and feel dreadful…
I have read people’s stories diagnosis of MS and the blindness and paralysis of entire sides is something thankfully I have not suffered but other symptoms seem to tick all the right boxes. My doctor is convinced all my symptoms are fever related but talking to friends etc and reading this forum I am worried it seems something else is awry…
I am posting this in the hope someone has suffered similarly and maybe this is the start of MS?
I am not looking for a diagnosis but if anyone can contribute anything I can take to my gp then it would be greatly appreciated as i feel like tearing my hair out!
Sorry forgot to add my joints are extremely painful for example if I stand up after sitting my ankles feel like they are going to snap and I end up walking like I pooped myself!
Hi, I’m undiagnosed but seeing a neurogist on Friday. I have alot of your symptoms and I totally get the tele thing too, this happens to me when looking at bright lights, I won’t let anyone take a photo of me using a flash because the light stays in my eyes for ages and ends up giving me a headache. I had Glandular fever as a teen and from what I have read there is a link. I am just getting over a bad few months of numbers, speech, memory and spasm problems. I do hope you start to feel better soon and get answers quickly. Kelly x
It’s true that there does seem to be a link between EBV and MS, however, it’s not as direct a link as, ‘get glandular fever and that becomes MS’. Many people have glandular fever and it doesn’t herald MS in their future. Wheras others have never had EBV and yet have MS.
It seems that to get an auto immune disease, you have to be unlucky enough to have a collection of circumstances that add up to for eg MS. Epstein Barr Virus being just one of them.
So, it’s entirely possible that what you are experiencing could be the beginnings of MS, in which case see if your GP will refer you to a neurologist for tests. Equally, glandular fever can hang about for months and months, making you feel absolutely terrible. So your GP could be right and just time is all that’s needed to be cured. For your sake I do hope that’s true. Maybe the best way to approach your GP is to suggest that in order to stop worrying about neurological issues, a referral to a neurologist would be very helpful for you.
Many thanks for your time to reply Kelly good luck! And Sue thank you too. To be honest not sure if other way round as I have had symptoms for a long time but as we do I worked through them… It seems now that glandular fever has exacerbated the symptoms to a point where I can’t ignore them and they are getting worse… Wasn’t sure if MS something that hits when immune systems etc low hence why i am noticing the odd symptoms getting worse… Docs on 16th so fingers crossed but already been told that no magic pill will give me the life back I had 6 months ago!
Docs on 16th? Is that your GP? If so, you should maybe directly ask for a referral to a neurologist. It’s hard to be assertive with your family doctor, especially for men (I think). But it’s a case of not saying, ‘I think I have MS’, or ‘I’ve looked on the internet’, but more ‘I feel that there’s something more wrong with me and perhaps it’s something neurological because of the symptoms I’ve had over…months/years’. And ‘do you think you could refer me?’ You could try the old ‘my friends got MS and says it’s just like when his started’ but to be honest, unless you have a good relationship with your GP, they’re likely to think they’re the doctor and you’re clutching at straws / wasting their budget.
It’s a total bugger these days. When I first had an MS symptom it was my finger had gone numb and wasn’t right after about a week. I knew nothing and was surprised when she referred me to a neurologist. But now the GPs control their budgets, and Dr Google is making everyone think they have something serious …
If you can’t get a referral to a neuro and you still have the symptoms (and assuming you still think it’s either MS or another neurological problem), you can always consider getting a private referral. If you can afford it, you frequently end up paying for the first referral but then get referred back to the NHS. And very often you see the same doctor on the NHS as private!
