LUPUS UK
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Any advice accepted in UCTD area

Sorry everyone but I've been diagnosed with a UCTD but also have a meningioma in my brain/spinal area (on a watch and wait for the latter). My problem, beside fatigue, is that I sometimes have a sort of delay between what my brain says I want to say and the words actually coming out!!!! I also get what hubby describes as a jittery day, when I can't seem to stop inside shaking! My problem being is...... Is it my UCTD or my tumour????!!!!!! Each time I mention to either specialist, I'm told it's not side effect of my condition! I'm on hydrochlorine etc but really need to find out what to do/ask next. Thank you for reading xx

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No need to apologise Angie....we're all here to help one another and maybe make things feel less daunting. I understand exactly with the speech thing.This often happens to me too and I'm told it is because I have MCTD. I find it's worse when I am under pressure in a group. I think this happens to lots of us. I think the more you worry the worse it gets so try not to let it to bother you too much. It comes with the delightful name of brain fog.

I'm sorry you have the double whammy of the meningioma. I'm sure someone here can help you more than I can with that. Good luck with it all.

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Hi Angie

I have UCTD. I was diagnosed back in 2012.

I get that jittery feeling some days, but for me I would say it is down to steroids. I am on HCQ and MTX; I have also been playing the game of getting off steroids for a couple of years. The lower my steroid dose gets the fewer jittery bone days I have.

As for the brain delay, it may also be down to fatigue. The MTX has just about knocked the fatigue off it's perch for me and that inability to get my words out, remember info, reason etc has more or less gone. Worry of course must also contribute.

You'll also find on the forums folk talking about when they are first diagnosed and the feeling that they have got dementia - again it tends to be down to fatigue and the initial stress/worry of their diagnosis.

I guess saying try not to worry is pointless - it would not have worked for me in the early days - but what works is distracting yourself - see if that helps.

all the best

Joy

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I could be writing your story 17 years ago, first problems were my memory .bright lights of balance at times .then diagnosis, SLE. Kept on about memory problem.couldnt have mri claustraphobic, given ct scan . told it was okay. still lotstof memory problems. another ct scan. told it was okay. scan was the same as first. then found out I have meninginoma. ben assured that it is of no concequence. that if everyone. was scaned you would find that a lot of people with no health problems who lived to a right old age would have meninginomas I have the usual mix of autoimmune plus fibro

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Welcome to the UCTD club Angie. I think you will find there are many of us members on here who are in it. I'm sorry about your tumour and shaky feeling. I have UCTD too but can't help with the tumour. Maybe it could be to do with your chest , a palpitation , the shaky feeling. I'm feeling light headed with palpitations at the mo so it's just a suggestion. I haven't got any other ideas. I'm sure you will love sharing on this forum. I hope your better soon. X

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Thank you all for replying it's been very much appreciated xx. Whilst I'm on here has anyone got any spare 'spoons' today please!!! xxx

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Hi Angiedj,

We're not able to say whether these could be symptoms of your UCTD or your tumour, but part of what you describe sounds like 'brain fog' which is common in people with lupus and other connective tissue diseases. You can read more about this in our blog article here - lupusuk.org.uk/coping-with-...

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Thank you so much, I've just read the blog & that's me! Makes me feel so much better knowing I'm not the only one 😀

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