weird neuro symptoms since last flare??

[brave]

Hi all ,hope all is good?well i blooged last week after yet another horrid flare ,it seems that even though im semi recovering i have sore glands as always ,but more worrying for me my CNS symptoms have gone haywire ,i always have nerve issue and pain ,bladder probs ,balance issues ,muscle twitches however this has gone crazy ,my legs especially front lower legs and calves are continually spasaming and twitching ,i feel really odd and my ears are ringing badly ,anyone suffer this?i hope it settles ?thanks guys brave

[DaleDiva]

I have most of those symptoms but no ringing in my ears. Can I be personal and ask what bladder symptoms you have I have a poor flow but never thought it could be Lupus. If I was a bloke I would think I had prostate problems..... lol x

[brave in reply to DaleDiva]

Have had bladder probs for over a decade,bladder spasms galore ,feel like i cant empty or need to wee every half hour ,like having permanent cystitis,a feeling of pressure on bladder pelvis seems swolen and inflamed ,it flares up and down ,its weird since my lupus really flared over 12 months ago and im still flaring my bladder has been bad everyday for 12 months before that it was intermittent ,the urologist seems to think its nerve related ,which would make sense seen as most of my symptoms are of a neurological nature.My mum had M.S i sometimes wander if that is what up rather than lupus?but my A.N.A and blood indicate lupus .my mri was clear of lesions so looks like lupus with CNS involvement ,scares me ;(

[tracynoe]

I get balance and ear problems the ear ache/pain, fluid in ear and fluctuating hearing have all been attributed to my vasculitis causing loss of blood flow this in turn can make my balance bad. i do have neurological problems too but nothing specific neurologist does not want to see me again unless things get worse. MRI shows I hve white patches on brain caused by vasculitis damage but these have remained stable for the last 3 years I also have a cyst on my pituitary but I am told that it has nothing to do with the ear/balance problems. I have had bladder prolems since my first pregnancy 32 years ago and have been told lots of different things from kidney infections floating kidney to bladder bleeds have no idea so we will not do anything!!! After the last investigation I decided that they had no idea and now I refuse to have any other tests as they all make me ill, my rhuemy agrees with me and now just monitors the constant blood and protein in the urine no one can tell me why some days I have to pee every 15 mins (exhausting) and other days I can go a couple of hours in between visits. I have to say that things have settled a little since being on Tramadol (side effect of tramadol can be lack of unrination) Also when I first saw my rhuemy she said that a lot of what is wrong with me can mimic MS so the relation to your mum is probably to be expected.

[brave in reply to tracynoe]

Forgive me .....does mimic M.S mean its lupus but giving alot of M.S symptoms?I have so many M.S symptoms but also a lot of lupus symptoms ?plus because of my elevated A>N>A im told lupus and fibromyalgia ?

[tracynoe in reply to brave]

Sorry I wasn't very clear. Yes it can give the same symptoms as MS but it can be Lupus/systemic sjogren's. (that's what I was told)

[brave in reply to tracynoe]

was diagnosed with sjogrens

[DaleDiva]

When I first saw the neurologist because white patches showed up on MRI it was thought I had MS, my bladder issues also fit the MS pattern. However what seems like 100 tests later the Neuro and Rheumy had settled on CNS Lupus. These auto-immune diseases all seem to overlap

[Hidden in reply to DaleDiva]

I agree. I think that all autoimmune disease is just one disease, only designated by the symptoms of the moment. I have more s/s of MS than I do lupus at this point…and have always had those symptoms to some degree..since childhood. I would bet in 20 years or less, lupus and MS with be considered patterns of the same syndrome…along with RH, fibro, and others. It's all inflammation gone mad. Cancer is a known inflammatory disease as well, and many of us are on meds that kill off the immune system making cancer much more likely. I just want to hide under the covers sometimes.

[brave]

thankyou

[LucyLocket]

Sorry you are feeling so awful Brave. I don't have the bladder involvement but can relate to the swollen glands and the tinnitus. I have had my 'lupus-like syndrome' (LOL) since my teens (now 46) but was only diagnosed with Primary Sjogrens back in August. I've got a feeling that everything has been flaring up over the past few years due to my stage in life i.e. middle-aged woman! Anyway, I'd never really had to deal with this ringing in the ears until the past year or so - mine is like a high pitched hiss and it can be very intrusive at times. I bought a Homedics sound machine (courtesy of Ebay as it was much cheaper on there) and this does help me at night-time. I'm often awake due to the insomnia that so often goes hand in hand with Sjogrens and the tinnitus is horrible - at least having a selection of monotonous sounds such as waves, rain, crickets etc helps to drown out the hiss. Just a thought for you to consider . . .

I'm due to be seeing a counsellor through the GP's for the first time on Friday as I'm finding it very hard to cope with one health problem after another and my anxiety levels have gone sky high - I constantly worry what the next thing will be and will it be something REALLY serious next time - I'm catastrophising as they call it but despite knowing this (and I'm in the middle of a psychology degree myself) I can't actually help my own mindset any longer. Have you spoken to anyone about the psychological implications of what you are going through?

Hope you manage to feel a bit better soon anyway

[brave in reply to LucyLocket]

Hi ,i have sjogrens also ;( lupus,fibro,the lot!am talking to someone regarding coping skills ,ive actually dealt with a lot and have always coped however long term health issues and pain have exhausted me mentally and now i cant cope with even heavy conversations without some kind of flare:(its as if my system is shutting down ,im scared .Its great your doing a degree ,and as far as im aware,a psych always needs to talk to another psych ,so dont analyse your appointment with the counsellor it will help you

[LucyLocket in reply to brave]

It is all very frightening and I don't think that the medical professionals always appreciate this fact. I started doing an Open Uni degree a few years ago when I thought that I would be able to hold down a career in that area . . . I was doing some volunteering for the Alzheimers Society at the time. Unfortunately I had to give that up as I don't have enough of a voice left to speak to people for very long (I was also using my voice to sing and cannot do that at all any more ) I am not going to carry on with the Open Uni studies as they are too expensive and I don't really see the point - I already have one useless degree!

Noone seems to have heard of Sjogrens . . . not even medical people . . . I'm always having to explain it. It's very easy to be labelled a hypochondriac too. Do you have children as well? I do feel guilty about always being tired and not able to be an ideal Mum for them . . . I also already feel guilty about the possibility of passing something autoimmune down to them! (You see - catastrophising once again!). I don't know anybody in the 'real world' who has Sjogrens or lupus - it would be nice to be able to meet up with people sometimes although I guess that would just turn into a big 'moan-in' where everyone compared symptoms!

My consultant wants to put me on mycophenolate or azathioprine and has also asked if I would go on the Tractiss trial for rituximab. Have you tried any of these drugs? I am very scared about going onto anything like them - at the moment I'm not taking anything but am trying to deal with stuff through diet, herbs and vitamins (I know that sounds pathetic but from past experience I know that if I start taking 'serious meds' there will be no going back).

It's good to be able to chat to people on here isn't it - hope you're having a good day today and not feeling too rubbish.

[brave in reply to LucyLocket]

yes i have children and feel so guilty for not being the mum i was;( i have been on hydroxy, codeine ,amytripltaline,i react badly to hydroxy ,biggest flare up ever ,i was alraedy in a flare and i got way worse.I will stay clear of heavy meds unless its a life threat situation,as once you start you then have the side effects of them also to deal with ,and my poor liver is already sluggish from all the other stuff i pump in my body .

[snowwolf]

hi i have exact same symptoms as you i dont know whats happening even worse we have no lupus specialists here i was refered back to my dermatologist yesterday lumps in my head like grapes fedup now .

[brave in reply to snowwolf]

Do you not have a rheumatologist near by??i wish you well