Stuttering

[faithnhm333]

I will be seeing the Rhematologist in October for the first time since my positive ANA result. I have began to stutter a little and sometimes have a hard time getting my words out. Is there anyone who has experience the stuttering with lupus

[Penelope-Mary]

Hello faithnhm...I used to stutter when first dx with lupus. I continued to until I had the anticoagulant ( Warfarin) increased. I am positive for anti phosolipid (or Hughes syndrome ), was on the 'usual' dosage and monitored 3 weekly. I read in Prof Hughes book that the INR : anticoagulant measurement should be a lot higher with APL and since that has been addressed I only stutter , or 'lose my words' if the INR is too low.

That may not make a lot of sense but bear it in mind if you are dx with APL along with whatever else the rheumatologist finds.

And good luck for the appt, hope s/he gives you answers.

Warmest wishes

PM

🐚

[Sara_A]

Hi,

Yes I have this, I've got antiphospholipid syndrome and lupus. I struggle with my words and feel really embarrassed sometimes. I've tried to tell most of my friends and family so that they understand why I do it. I also sometimes start talking before someone else has finished because otherwise I forget what I want to say which I have also explained to friends as I feel that I am being rude interrupting them!

I take aspirin but still find I struggle with this.

[Wendy39 in reply to Sara_A]

I find myself talking over people and it's embarrassing! But I can't seem to stop myself. I too, often lose my trail of thought and it doesn't come back. It's gone for good. So many lupus symptoms to deal with.

[Penelope-Mary in reply to Wendy39]

... and Wendy!

[Penelope-Mary in reply to Sara_A]

Oh that's me too Sara! 😚

[Neriah]

Just to confuse matters, I have the stuttering problem, but do not have AP and don't take warfarin. I think it's partially connected with steroid use; when I'm on more than 15mg of prednisolone, I both stutter and shake. But I'm on a low dose atm (5mgs) and it can still occur. I also lose words.

[imsickandtired]

I have occasional stuttering often followed by a short period of being unable to form words (aphasia). This usually only lasts for a few seconds up to a couple of minutes. Mine turned out to be mild simple partial seizures caused by lupus.

[faithnhm333 in reply to imsickandtired]

Thnks. I appreciate the feedback

[Wendy39]

I can totally relate to this. I have SCLE and have suffered brain fog, trouble finding my words, remembering names of people or objects, memory problems, I have stuttered and been clumsy. I am not positive for Hughes/APS. I get this whether or not I'm on steroids. It's very embarrassing. I wonder if it's due the fact my GP says I have lupus with CNS involvement (Central Nervous System). For me, these symptoms come and go. They are not a constant feature.

[justjan1944 in reply to Wendy39]

This explains what I experience also. I have CNS involvement also. Not constant with me either. Happens when I am under stress and my face gets beet red as I have skin involvement that never completely goes away.

[ettamerlene in reply to Wendy39]

I too. Stress brings on the stuttering. I am a nurse and this gets embarrassing. I call them my spells.

[Nikki246]

Yes when I'm tired or having a flare and sometimes just can't remember how to pronounce a word (or can in my head but it won't come out of my mouth! lol

Can be very frustrating!

[Buffy14]

I started to stutter very badly and it was followed by a massive seizure, I had a blood clot and it was a mini stroke , I think it was more to do with having my acoustic neuroma removed ( type of brain tumour) than my lupus i do think I am getting more and more forgetful and I do interrupt people when they are talking didn't see that as medical thing until reading comments on here , I worry I might be getting dementia but I think that could be me getting a bit neurotic because my aunt has just been diagnosed with dementia

[justjan1944]

I don't stutter, I think, but my son says it sound like I am trying to talk southern again. My speech is slow and I have a hard time getting my words out. It annoys my son, but he is starting to understand that it is not something I am trying to do. Good luck for me it happens during a flair. just jan

[Sara_A]

I have actually on a few occasions forgotten my age and had to ask my partner! And at only 37 that's a bit bad!

My memory has improved since the aspirin (approx 10 yrs now) but still have these kinds of episodes like this ur with the age. I don't think it's the steroids with me have been on low dose steroids non stop for about 10 yrs now! With intermittent higher doses and injections too.

I do worry that people just think am bit odd when I take ages to say something but it's good to know it's not just me!

[MVJohn62]

I agree with Neriah, It is more likely with usage of Predniselone

[Hidden]

I'm the same and I have an Italian accent too but I used to speak really well ( I've been in the uk since 1993) just a bit of a accent but now I can't move my tongue properly even when I speak my mother tongue I struggle . I'm naturally shy so all this made it impossible for me to socialise ppl think I'm weird and odd , you can see it in their faces , ppl who used to speak to me they avoid me now , even my neighbours . No many ppl know I've lupus they must think I have some mental illness bc of the loss of my husband 3 years ago but it's nothing to do with that .

[donnabrain]

I have APS and sjorgrens and I started stuttering ten years ago when I became unwell

It's worse when I am tired

also word finding difficulty

I think it is quite common