Total loss of speech

Has anyone lost their speech completely when having stroke like symptoms?

This has happened twice now and on each occasion I have not been able to say anything for about a week, although I have understood what has been said to me and know what I want to reply. I am able to write my answers luckily. When I lose my speech I am unable to open my mouth more than a finger width and have numbness in my lips, cheek and nose. It is also difficult to move my tongue.

I'm desperate for answers so hope some of you can help me.

Many thanks


26 Replies

  • Hello Janekins. I'm really sorry I don't have an answer for you. Only to say I too have experienced this quite a few times now and know how frightening it is. I too can fully understand what is being said but cannot open my mouth to reply. My top lip is usually frozen nearly all of the time now. Unlike you though I am unable to write because usually the right side of my body stops working too (I'm right handed). The last attack I had I lost sight in my right eye too. I am going to the London Bridge Clinic in January '13. If I get answers to this and many other questions I have I will PM you. Good Luck!

    Love from here InSpain. xxx

  • Hi in Spain

    I'm going to London bridge on 5th Dec. So I may have some answers for you! In April my left side was affected, I'm right handed. However two weeks ago it was. My right side but it recovered about 20 hours later so I could write. Does your speech go completely and for how long are you unable to speak. In April it was two weeks before I could say a full sentence. - so frightening !!!

    Thanks for replying


  • Hi! Yes, my speech goes completely. I can sometimes make sounds but my husband tells me that it's impossible to tell what I want to say. The last episode I had like this I was unable to move, urinate by myself etc, speak, walk or see properly for about 36 hours. But the doctor's told me it wasn't a stroke or a TIA but I'm not too sure if I agree with them or not! I shall wait to have a diagnosis from London. However, I do agree the whole experience is really really frightening. Good luck at the beginning of December - You beat me to it!! :) Let me know if you find anything out won't you? xxx

  • Hi there, I have heard of this happening to others and in fact briefly this happens to my daughter who is on aspirin and plaquenil for hughes and lupus. I hope you get some more answers. Mary F

  • Thanks Mary. I'm concerned that my hospital are just dismissing it as 'functional' and thought it would be a good idea to get responses from other members so I can say it happens to others too!!!


  • Do your symptoms. affect your right. side, this is often associated with some speech problems.

    Hope you feel better soon


  • Hi Karen

    In April the left side was affected but this time it was the right . My speech has returned quicker this time.

  • my wife looses speech during a seizure, and takes a while to speek for about half an hour after - that is about it - only during a major stroke she has lost sight, right side issues and speech can bee slured

  • Thanks for your reply skylarks. I'm wondering if I might have had some sort of seizure as I don't remember all that happened and my husband said I was just staring ahead looking vacant.

  • Hi,

    I have suffered the loss of speech, it comes with right sided weakness and or lack of movement. I also get pins and needles and numbness. The loss of speech only last about 10 mins however its the same pattern each time I get horrid headache. Sometimes it been put down to TIA sometime it a migraine who knows.

    Just wanted you to know your not alone


  • Thanks Clare.

    My speech has disappeared for up to a week which is so frustrating. I've had other times when I have bad head pain in the night and when I get up I cant speak for about 4 hours and then it gradually comes back.

  • Hi Jane, I'm sorry to hear that you're having this problem. But, I don't think you're alone with this. While I haven't totally lost speech. I've developed a stutter/ stammer and long blanks in speech for about the past 6 weeks. I was diagnosed with APS about 8 years ago when I had a clot to my small intestine causing internal gangrene. I get very frustrated by my doctors who swing from my also having SLE/ Bechets/ MS - (nobody in the US knows anything)I also have ulcerative colitis - so the gamut of auto-immune disorders. Am on steroids, coumadin, plaquenil,- went through a year of Golimumab. But, there's really no explanation for the latest speech problems and I find the long pauses are getting longer and more embarrassing. I really can't do my job anymore as an Insurance Specialist without speech. Please let me know if you get any further information and I hope it just goes away for you and doesn't come back. Take care , florence

  • So sorry to hear you are having such a difficult time. I can imagine juggling these difficult conditions with APS must be a nightmare. I dont know if it would be possible to consider swapping from coumadin on to something like Fragmin as Prof Hughes says these work in different ways and many people find that sometimes when they are not getting the results with warfarin heparin can just make the difference. Perhaps this would be something you could discuss with your Doctor to try as an alternative or trial in addition to if your INR is a bit low.

    Please let us know how you get on.

  • Hi APsnotFab

    Maybe this is the answer. I've been on Warfarin for 11 years. Does it become less effective with prolonged use? I must ask when I have my appointment in London .

    Thanks for replying


  • And ask for an EEG while your at it too! Good Luck!

  • Hi Florence

    Sorry to hear you have been so ill.

    Can I ask about your long blanks of speech that you mention? Do you lose track of what you're saying in mid sentence forgetting completely what you were talking about ? Or do you get what happened to me 2 weeks ago when my speech got slower and slower until it stopped completely?

    I'll let you know if I get any answers when I go up to London for my appointment.

    Thanks for your help.


  • Hi Jane, I do lose track of what I'm saying in mid sentence and just stop. I don't have any slurring or get slower and slower. What's very strange is that if I write down what I want to say and read it aloud, I don't stutter. My doctor thinks everything is due to depression (not the APS) in fact he doesn't relate anything to the APS (even when I was hospitalized for very severe vertig accompanied by an INR of 9.3 and vomiting). He shrugs his shoulders and looks at me like I'm nuts. Now, I'm just venting because I don't like my doctor. It's funny because after so many years of consistant INR numbers, in the past year, I had to be hospitalized 3 times for this. I hope you get better answers for your situation and look forward to hearing about what happens. Best of luck to you. Best wishes, Florence

  • When I was having frequent tia's I had 2 episodes where lost total use of speech for period of hours. I later found out that this is stroke related. I was on no medication which would do this. Do you have a neurologist you could talk to about this? Seems you are getting lots of ideas here and I wish you lots of luck!

  • Hi leigha

    The neurologist I saw in April said I hadn't had a stroke before I'd even had any scans. My discharge form mentioned functional symptoms and this was immediately the route they went down this time. I have since seen a neuropsychologist but I don't think it is functional. My gp agrees with me.

    Thanks for replying


  • I have not had good luck with any neurologists and once they put functional in your chart that is all a neurologist will see unless you have MRI scan to prove stroke. I have had a functional diagnosis for almost 5 years even started the first non-profit organization for it and symptoms were getting really bad fast. I was having chest pain and coughing up blood with it, I was frequently loosing my speech or ability to speak fluently, and drop down falling. My GP luckily suggested a hema. that diagnosed me with Sneddons...meanwhile when I sent this info to my neurologist he sent me a referral to a psychologist even though I have been there done that and was cleared of any psych connection to my functional symptoms. i think my Hematologist couldn't wait to send his diagnosis letter to my neurologist. I say stick with your GP.

  • Thank you so much for replying!! That's exactly what I thought this time I was in hospital. Functional symptoms diagnosis reared its ugly head straight away!!! Got to go now - got appt with neuropsychologist keep trying to tell him that my gp and I don't think it's functional but he's influenced by neurologists I think !!!!

  • I have to add that I have even been to the Mayo clinic and the National Institute of Health and have participated in clinical trials for FND. My hematologist was surprised the Mayo clinic results said my abnormal EEG, EMG, and something else can't remember put down as normal in final review when he could see the actual test was not. He was trained at the Mayo clinic and said he hoped we filed a complaint. Even he could see that label was put on me and then no one would question it. That was 4 1/2 years ago. I still would get "well you have been to all the right places and they all said the same thing" luckily my GP has gotten to know me and finally started pulling all my blood tests together and finding odd WBC fluctuations. Only because I was going down hill so fast and coughing up blood though would they listen. There is always a reason for functional symptoms. Listen to your heart... You know if it is psych related or not and don't let them tell you how you feel or don't feel. power to the patient!! and If you live in the UK they are pushing everything into a functional diagnosis to save money and the US is starting to follow. It is a disgrace.

  • Hi. Being labelled is exactly what I'm worried about!!! I'm seeing my gp on Thursday for the first time in 3 months and I know she doesn't agree with the hospital diagnosis of functional. I'm also going for an appointment at Guys hospital in London next Wed so hoping they can change my hospitals diagnosis! Didn't see neuropsychologist yesterday -appointment was for a brain cognition test!

    Thanks for all your advice


  • Many patients with APS (especially those with neurological symptoms) need an INR 3.5-4 (per Dr Hughes and see current poll on this website) and some also need the addition of an anti platelet agent like aspirin or plavix. Some people as above (myself included) have fewer symptoms with LMW heparin than warfarin. I hope those having major neuro symptoms above will get a doctor who knows a lot about APS because hopefully your symptoms can be improved (or even resolved) with the proper treatment. P.s. the first patient in Prof Hughes book (available in Kindle format on Amazon) "understanding Hughes Syndrome" lost her speech.

  • Hello Salty

    Thanks for replying. Your information is interesting as I was wondering if my Warfarin might somehow not be quite so effective now as I have been on it for about 11 years - my INR has to be around 3.5. Maybe I do need something else as well as the warfarin.


  • Good luck with your upcoming appt! I feel very hopeful Prof Hughes will get you doing better. Please let us know what he advises!

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