Been referred to Neurology

[Maya23]

Hi everyone.

Well I've just seen my consultant today and explained to him why steroids didn't agree with me (he was shocked by my near-death experience -when I nearly took my own life due to a bad reaction to them!). I also explained that the side effects of Naproxen (increased brain fog, gut pain, bladder discomfort, palpitations) were not helpful to me. He agreed that I am very sensitive to drugs. He only prescribed me the lowest possible dose of steroids 10mg but even this was too much for my system.

I also explained to him the success I've been having with the diet. As I've said before, I'm now gluten free, sugar free, and I limit my dairy and chocolate intake as these give me headaches. I take Turmeric and Omega 3 fish oils. I know the diet is working because I notice that if I break the diet I get an immediate increase in symptoms. I am also now only taking Naproxen here and there, not on a daily basis like I was before. He was impressed and encouraged me to continue with the diet! He also seemed to support my request to be referred to a homeopathic hospital (I didn't know they existed until a friend in Scotland who has Lupus was referred to one!). he said I had to be referred through my GP.

I had a few concerns to talk to him about. Although the pain in my joints and tendons has reduced over the past 3 months, I have a continuing problem with neurological symptoms. I'm having a type of flare at the moment that I get regularly, characterised by vertigo/dizziness, brain fog/poor concentration, and this comes along with negative voices in my head telling me I'm a waste of space and such things. Not pleasant. I often can't do anything much but watch films/TV on days like this and these flares often last a week.

Does anyone else get vertigo? It's when you move your eyes to the left or right you feel like you are falling, turning my head to quickly makes me feel disorientated and likely to stumble if I'm standing up so I have to stand up and walk very carefully. I sway all over the place like a drunk person and sometimes I nearly fall over!

It's interesting that the bad thoughts/voices in my head only seem to occur during a flare with these symptoms, and they go away as soon as the vertigo and brain fog disappears. Has anyone else experienced this?

I also get strange sensations in my hands and feet, like a subtle tingly restless feeling (but not restless leg syndrome) and I don't know what to do with them so I fidget. It doesn't interfere with sleeping thank goodness. No numbness or actually tingling.

I talked to him about all this and so he's referred me to neurology.

[MandieR]

WOW!!!!!

You are dealing with so much, I sympathise with you. I too have many of the symptoms, the brain fog, vertigo, the need to make my feet jump and my legs etc......they dont hurt but i need to move them constantly to ease the sensation I have when I keep them still.

My head is always filled with negative thoughts.

I am too fat (well, I am)

I am getting old

I am wrinkly

I cant enjoy a full life, as I see it, like go dancing or walking or out for the day, most of the time i dont want to get dressed and even go outside my house.

I am now under Lousie Coote Clinic, thank Goodness and am hoping to see a change in the way things get dealt with.

Truly hope that you start feeling better very soon xxxx

[tintin49]

lousie coote clinic is that at st thomas's

[cantello in reply to tintin49]

Yes that is where it is. I have been a patient there for 9 years they are wonderful. I was referred to them all that time ago when I was diagnosed with breast cancer they also organised my nasty hip replacement last year having been walking around with a broken hip for 4 weeks and being fobbed off by my local hospital I called for an urgent consultation and 3 weeks later under went the hip op also at St Thpmas' Everyone I have seen at that clinic are amazing

[brave]

Hey,dyrad....my first symptoms of this over a decade ago were neuro symptoms ,i spent a year between ,E.N.T ,neurologists,endocrineologists,cardiologists ,never a rheumotologist!which evidently was the one i really needed to see?for me the muscle and joint issues came way after these.Since the official diagnoses in june my neuro symptoms have got way worse,my M.R.I showed a small area of dead tissue,but it was assumed i was born with it or a possible chronic infarct ?no evidence of leisions,i reckon in folk like us ,lupus plays havoc with our nervous symptoms ,and like you im super sensetive to meds and pretty much everything in life,i see my consultant friday ,its like waiting for xmas to arrive ,i think you are so dedicated to your diet and you seem to be on the same wave length as i am ,in terms of symptoms and how we address healing in a more complimentry way,i hope you get a referal to the homeopathic hospital?have you tried wheatgrass shots??just a thought ,you can get more info on the net!good luck with all ,keep well ,brave

[Maya23 in reply to brave]

Hi, I just wrote you a reply and it disappeared!

I'll try again! It must have been scary getting the MRI results back and finding an area of dead tissue? Was this recently or have you had time to process this and come to terms with it? Do they think it may grow or that it's responsible for your neuro symptoms?

I'll have a look at wheatgrass -I've not tried it.

Glad to hear that I'm not the only one who is sensitive to meds .. and life in general!! take care xx

[Sher78]

Dryad, I was tested 4 Cerebral lupus January & despite everything coming back satisfactory, my Consultant Neuro has said the lupus/APS has affected my nervous system, causing me 2 go in2 acute psychosis. I am on antidepressants & antipsychotics, which ARE helping but only enough 2 take the edge off things & leave more of a gap between outburts. My symptoms went on 4 a while b4 my Rheumy would even listen, he just kept telling me I was suffering with depression although I don't know many people with depression who 1 minute absolutely hates themselves & doesn't want 2 b here, but the next feels absolutely invincible & believes they r the most important person in the world, hallucinations, both audible & visual, having conversations with myself, severe mood swings & outbursts of anger, dizziness, severe paranoia, the feeling of people touching me & things crawling on me, involuntary spasms, randomly falling asleep, totally losing touch with reality the list goes on! It really is frightening but it sounds like u're in good hands so I'm sure they'll get 2 the bottom of it. My rheumy will STILL not accept that it can have this much affect on the nervous system, despite my neurologist AND my retired Rheumy both telling him this is the case. I've even gone in armed with loads of literature about it but he still knows best :0/ & I can't even change Consultant as most of ours r retiring this year lol! Good luck 2 u

[Maya23 in reply to Sher78]

Wow, you really have had a bad time of it! Sorry to hear that your Rheumy is in denial too! how are you being treated for these symptoms? Are they all the time or only when flaring? It must be really hard to live with such extremes. Thanks for telling me about it. x

[Sher78 in reply to Maya23]

Not sure if it's only while u're in flare as this is the 1st time I've experienced this eventhough I was diagnosed over 18 years ago so it's all new 2 me. In all truthfulness, it took me so long 2 admit 2 my GP about it all as I was worried they'd lock me up or something lol! It's funny how even the most sensible of us can lose all rationality! I'm on antipsychotics at the moment, which help 2 a certain degree. The good news is, things should return 2 normal as the lupus & everything else calms down but I know that some of the symptoms will remain (such as the headaches, dizziness, pins & needles etc) as they can b attributed 2 some of my other conditions too. At least I'm not seeing men in my garden waving at me now lol! x

[roobarb]

Hi dryad, like you I have had lots of neuro type symptoms, periods of severe vertigo & numbness earlier in the year, now improved but not resolved. MRI scan showed nothing, so it's been attributed to fibromyalgia by the rheumatology dept. Also dramatic mood swings, like mini bio-polar, & periods of overwhelming depression. As if lupus isn't enough to deal with, without all this. Coincidentally I am also sensitive to many drugs, which has developed more recently. I also believe diet can help us a lot, but I still always reach for the biggest bar of chocolate I can find when I am feeling poorly!

As with many aspects of lupus, the effects on the brain are only just beginning to be understood. I hope the neurologist you see as as helpful as your consultant sounds.

Very best wishes. X

[Sue2803]

Last time I saw my Rheumy, I told him I was having attacks of vertigo, which were making me vomit and he said I probably just had a virus!!!

[Sher78 in reply to Sue2803]

Virus? Love it! The thing that annoys me is that they should b working WITH their patients. Surely they must realise that some of us r actually going 2 swot up on our illness?

[Maya23]

Wow thanks everyone for your comments, it's good to hear about your own experiences so that I don't feel like the only one going mad! Today I tried to walk away from the checkout without paying (I forgot!) and forgot my 'memorable name' password to my bank (it was my own name!!) and nearly fell over a couple of times in the street when I suddenly spun-out!! However I was able to laugh about it and that helps! Best wishes to you all xx

[mstr in reply to Maya23]

Hi Dryad, I hope you get it all sorted soon at the neurologist. Lol at the forgetfulness and I'm so glad it's not just me. xx