Elaine’s Story - Dystonia/Myoclonus

Elaine’s life was turned upside down when one morning she woke up unable to use her legs. After meeting with a neurologist, it was recommended she have DBS. Elaine underwent surgery and says she is thrilled to now be able to manage her symptoms.

[@karonbrisson8215]

I went to different neurologists for 20 years and finally was diagnosed with myoclonus dystonia 4months ago. I'm seeing a surgeon tomorrow to see if I am a candidate for DBS surgery. I'm glad it's helped her.

[@MadSharukh64]

Hlo

[@natalieweiss5193]

I have myoclonus. The jerks/spasms are really bad when I’m tired and/or dehydrated. It’s really embarrassing. I have a referral for neurology but don’t have insurance so I can’t afford the MRI yet 😒

[@James_-_B]

I feel awful for you. I'm so lucky to live in a country with free medical care. Have you managed to see a Neurologist yet? Got my appointment coming up, Myoclonus is getting out of control again

[@briannacollins9492]

I think I have this too, I get jerks when I’m tired, trying to focus when doing something, anxious, or when I wake up the next day after drinking… did you ever find a solution? It’s so embarrassing and frustrating 😞 my doctors don’t seem to take it seriously

[@eyedea81]

@Brianna Collins those sound normal circumstances when having jerks and/or twitches

[@Bob31415]

The American "healthcare" system strikes again.

[@norowaretahito]

I also experiencing spasm,twitch and jerks but
i dont know if it's a symptom of action myoclonus.... But I don't have the money for diagnosis and treatment for this kind of disorder.. :(

[@ferminenriquezamorapineda2832]

I am with the same condition, and it is kind of progressive

[@Alison0305]

Hopefully your health improves.

[@jadkins6500]

Same , I live in England so I did the to the doctors but they have not diagnosed me yet especially in lockdown I'm finding it hard to get my appointment

[@maxdystopia674]

who else goggled a lil when they heard Dr Baltuch…”ball tuck”😂😂😂

[@fl3693]

My dystonia is related to hormone flux. My body goes defcon 4 on the luteal switch to menses when the progesterone is high then a burst of oestrogen sends my vascular system nuts. I have EDS , cranial cervical instability and a chiari and vascular stenosis. Hormones affect the dilation of blood vessels as die stress due to adrenaline which is a vasoconstrictor.

[@healingpodcast]

Im asking my joshua to watch this precious video

[@lornab2555]

Did you have problems with your speech?

[@loveconquersall143]

She said she did ;)

[@Aphrodite_ErosLuvChild214-80]

Probably did flip a switch , Probably put her to sleep and when she woke she was healed its psychological 😉