can't talk for almost a year

[Markspyb]

Hello I am I my end 30's

I had a work injury last juli, resulting a fractured finger tissue damage. After 10 weeks i was booked in for a manipulation under a Regional Arm Block and found this quite painful. I was sent home with increasing pain affecting my fingers and my whole left arm. I attended physiotherapy the next day under local anaesthetic but felt very dizzy and was generally not myself over the weekend. The following Monday which was only a few days later i woke up and collapsed to be found at the bottom of the stairs by my partner. I was awake but appeared to be very confused, had lost speech, suffered with left sided numbness and was also getting headaches. The Paramedics were called and i was taken to hospital where investigations including MRI scans excluded any major problems such as stroke. I was subsequently referred to see a Neurologist and an ENT specialist. Together in conjunction they diagnosed me as having a Functional neurological disorder.

Now after 1 year has past I still can not speak a word as you all can imagine, the impact on my husband and two young children has been horrendous. Since the workplace injury my life has been miserable and the impact on my family and myself is almost intolerable. I have been cast into a world of silence which has a huge effect on every part of my life. I can't telephone or communicate simple things.

I was told that I could lose my job on medical grounds and that DDA does not apply because I can do some of my house chore.

My finger is still not ok and I will be having surgery on it in the next couple of months.

I am so frustrated ! Am I disabled ? Will I ever be able to speak again ? Please has anyone got any information on what to do or where to go ?

Kind regards

[DNE92 Moderator FND Hope UK]

Sorry losing that sense is just horrendous. Sorry that I can't tell you very much. I have daily seizures and they can start with me going totally mute and/or finish and I still cannot speak but in my case I'm taking about under an hour. Have your health professionals given you any prognosis or is it the usual answer we get when we ask something -'how long is a piece of string'. My voice can go croaky for no good reason - like I don't have a heavy cold but it sounds like I do.

I'm going to ask my neurologist about my sessions of being mute and see what he says. I'll post an answer. Unfortunately I'm not seeing him for about a month. Not hopeful that I'll get any joy but I'll still ask. Having no speech seems like a serious disability. Can't you get PIP - if you can't speak then how are you supposed to be able to live an independent life.

Be thinking about you.

Cheers

Lou

[cathys20]

For the first year this all began I was for most of it speechless. I could make sound most of the time but was unable to make my tongue and mouth work together to speak. I lost days and weeks without speaking, being able to communicate to my two girls who at that time were being home schooled by me. I remember thinking things and wanting to share them with the girls and my husband, but days would turn into weeks and all of those thoughts would be lost. I started learning sign language, but none of the family learned it with me other than the alphabet. Simple signs like medicine, different foods and drinks they all learned but complete thoughts never came. I eventually probably like you began using a white erase board to at least write simple things, but longed for conversations. I was eventually started on a seizure medicine, Tegretol, that loosed my tongue and mouth. I was then diagnosed with spasmodic dysphonia, as i could then speak but only with a whisper. After many years and other medications I can now talk on most days, still days with no talk, but mostly talking almost completely normal. I pray you will have an open Dr. that will try some medications, especially an anti-seizure drug, I truly believe it will help you. Something almost always sets this in motion, for you it was the injury and subsequent surgery. For me it was a brain surgery followed by a spinal fluid leak. Over the years I have had so many neurological complications and now diagnosed with an auto-immune disorder that is racking havoc on my peripheral nervous system. I think the voice was one of my dark times, I so missed those conversations with my children and hubby...Please know you are in my thoughts and prayers, I do believe there is help for you. Praying you get it. God Bless, Cathy

[cgarff]

Hello Markspyb,

Oh how I wish I could give you advise on what to do for this, but I can give you support from one that deals with vocal issues as well from this stupid disorder. Like Cathy said her vocal issues started in another way, as did mine. My voice issues started with just a common cold that I caught 8.8 years ago. I lost my voice during that cold, however the cold came and went, but my voice didn't. It proceeded to have issues for around a month and a half, with a few small breaks here and there which we found to be odd. Then I got it back just to lose it again. At one time it was thought to be from Acid reflux, so we did stomach surgery, and that ended up causing swallowing problems, but I got my voice back for about a month, then to lose it again.

I have been through many speech therapists, CBT therapists, ENT's, Neurologists throughout the years. It was originally thought to be the spasmodic dysphonia, but then they tried the botox shots, which actually took my voice away completely. The diagnosis was changed to muscle tension dysphonia. I was able to get it back here and there, and with help from speech therapists had an amazing 6 months free of voice issues. It was glorious. But that is the longest I have been with out issues since Dec 08. About 2 years into losing my voice I started having muscle issues I believe from some medication I was trying for my voice, and that started a chain reaction of fun. My voice problems have gone from a hoarse voice/whisper voice to a hoarse voice/ whisper, stutter, slurred, inarticulate, a few words here and there to no words at all without warning. Lately I have to watch what is happening when it changes to no words at all, because that can be a trigger for me that I could start having seizures.

Losing your voice can be so very lonely and heart breaking. You want so badly to say what is on your mind, or what is in your heart, but you can't. It is stuck wanting so badly to be set free, but it is like trying to talk through a cinderblock wall. The person on the other side can't hear you. So you sit in your silence long, hoping, and hurting. With me, the depression starts in, and doesn't help. The white board can only help so much, but doesn't express how you want to portray the message does it?! There are apps out there that you can type them out and it will read the message back to the person for you, which is sometimes faster than writing, they help, but again, a lovely computer voice.. BLAH!

As I said before, my heart breaks for you. I know that loneliness, I feel that pain, please don't give up, please keep trying to find answers. They have got to have something out there that can help us. Chin up, stay strong, do you best to be happy, and take care of your sweet family. Find the joy in what you can do vs what you can't. I am here to "Chat" if you need it.

Cheryl

[walkingweather]

Hi, i have recently gone mute.I cant concentrate anymore and having abcences, i have had to get back in touch with my neurologist and being seen in December.I did not have these symptoms like this a month ago, i think they are getting more intense.I had the coldness ,hotness ,tingling, eyes shuting. head to heavy to hold upright, sleeping all the time, words coming out wrong, making up new words,illusinations,falling,itching,blackness on foot in hot water,slapping mouth,not able to walk what a battle ,i feel for you all.Even thinking you are going to stretch your leg will start something off.After accepting the brain is not giving the right signals to your body,and gone mute and cant move i have to literally call my daughter to start me off walking and guiding me and i still could just stop dead and not move.