anyone else lost speech altogether

[mariethewitch]

hi i was wodering if anyone could help me , as i feel so alone my new fnd symptom on top of everything else total loss of speech before it was always slurred and pronounciation was wrong etc... but for the past 5 weeks i have had no speech at all not even able to mumble jibber jabber , i seen the neuro last friday and she put me on waiting list for speech therapy up to 3 or 4 month wait she said but was not willing to do any tests to rule anything else out,

the trouble i searched around the fnd sites and i cant find nothing about total loss of speech they just talk about the slurred speech disturbances

already being housebound and very limited in what i can do , i am scared and feel so alone as total lack of speech is so isolating , its so hard being sat in silence all the time and the health proffessionals just dont get it

[healthray]

Marie, my heart goes out to you. Hang tough my love, you will get through this. I have an atrocious FND with sensory symptoms. I'll not bore you with the details. But it's a battle. One thing I'd suggest is finding a neurologist or neuropsychiatrist who has some understanding of these disorders. Get away from unsympathetic docs. Ask if you can have an fMRI ( Functional MRI) done to map your brain for the common physiological changes that occur with many FMD's. That would at least give you a little diagnostic evidence that you are truly and seriously ill. Also inquire about TMS ( Transcranial Magnetic Stimulation) which is becoming a frontline treatment for FND's. Another, newer therapy that repairs the brain in a way similar to TMS is Ketamine infusion therapy. And it's 1/3 the cost of TMS, though no insurer would be covering it yet. Nonetheless, it is rapidly gaining widepsread acceptance.

Be adamant with your doctors, be strong when you are alone, come here to commiserate , God Bless and good luck.

[mariethewitch in reply to healthray]

thankyou i will keep trying , its been 12 years now that i have had fnd, it used to haunt me in forms of episodes but since march 2017 its been permanent , i will ask neuro when i see her next for a fmri which i had my appt in the post today it will be in september

brightest blessings marie

[healthray in reply to mariethewitch]

Outstanding! I wish you luck and a 2018 that sees your health turn a bright corner.

[mariethewitch]

so true you dont need your voice , but i find it frustrating when my 16 year old needs telling hes one of these that thinks everything belongs on his bedroom floor and cups belong in his bedroom i swear if health and safety came out they would condemn his room i think i would need a tetanus shot to enter it , and hopefully the speech therapist will be able to help me get some speech back so at least i can nag my 16 year old to tidy his room as writing it down or texting him doesnt have the same affect , maybe i should text him and tell him if he doesnt sort it ,i will put a photo of his toxic waste site on facebook , but i would just love to be able to say to my kids i love you as i know its hard on them and i do sign it to them but its not the same , i will try your techniques as they sound helpful thankyou xx

[mariethewitch]

so liking your idea , the paint brushes are coming out and i may even paint it in a pretty shade of pink , i so feel for you my eldest daughter doesnt bother with me because of my fnd and its horrible because we dont choose to be like this

right off to go through my paint stash i may even have some glitter paint , and kit up to enter the toxic zone gas mask, waders and hasmac suit , imay be gone some time xx