Hi I am looking for some advice and guidance as to what to do next I got sick almost 6 years ago in julystarted feeling like I had flu and a bad hangover Every day got by October I had lost 2 stone in weight felt really bad Exhausting and weekness and spent 2 weeks in bed G.p initially suggested lupus so after a few years if going to different dr And me being able to function But not being well I got diagnosed in London with lupus and started medication after about 6 months I did feel a bit better my bloods showed nothing only a raised Ana I have had bad episods over the last few years but nothing like what I am going through at the moment I had an MRI scan last nov which is clear My symptoms now are as follows Severe chest pain into my back and tightness Fuzzy mouth like eating popping candy all the time Light headed feeling faint Double vision on and off Headache Bad balance and dropping stuff My body feels like it is vibrating all over and with pain Exhausting Eye pain Heavy legs I have to concentrate to walk Feel like I have the flu And a really bad hangover I know these symptoms could be anything But do they sound like ms Just come off 8 days of steriods and don’t feel any better at all Any advice I would appreciate Thank you
Hi Alex and welcome
While some of your symptoms are quite MS-like, a lot aren’t, so I would say that it’s not likely to be MS, especially as your MRI is clear despite a fairly long history of symptoms. I’m not a neuro though, so could be wrong.
Is there any reason why you’re now doubting your lupus diagnosis? Was it not properly diagnosed? And what does the consultant who you see for that say? Could lupus be causing all of your symptoms?
Sorry I’m asking more questions than I’m answering
Thanks for asking the questions The dr here in belfast has always said I have lupus like symptoms But would not treat me so I went to lupus clinic in London And they diagnosed me no not questioning it just worried That I am so sick again now x
But that dr would not treat me for anything
Can I ask a question about MRI I have been told that MRI can be clear but then when u get it with contrast it can show things up is that the case
New lesions don’t always show up on MRI because they aren’t big enough yet. Contrast can sometimes show where these are. However, it only really makes a difference if it is used in the first couple of months of symptoms starting. After that, the lesions would most likely be visible without contrast.
Contrast is also used to show which lesions are “active”, i.e. are inflamed and are part of a current attack.
If you’d had your symptoms for more than a few months, contrast probably wouldn’t have made any difference to your MRI results.
If your GP isn’t treating your lupus properly or giving you the support that you need then I strongly suggest that you change GP. If it’s anything like MS, GP’s won’t know much about it - in which case we have to be our own expert! I’ve just had a look at this link which seems a pretty good starting place anyway: http://www.nhs.uk/Conditions/Lupus/Pages/Treatment.aspx.
Is there a forum for lupus? Maybe they will be able to tell you how consistent your symptoms are? And if they say that they aren’t, then you’ll know that you need to be really firm with your GP about getting more tests.
There is website called living with lupus which i think has a forum. Ive browsed it myself over the years. Maybe you are on medication that does not work for you? Might a different drug ease symptoms?