[Kels]

Hi just to add more info the neurologist said the jaw, mouth were good also but I know something neurological is happening within me. Thanks.

[Kels]

Hi I haven’t been diagnosed either but have seen the neurologist twice. I have extreme anxiety and depression and feel so alone  as my partner and family think that just stress is causing my symptoms. I’ve had CFS for many years so have had benign fasciculations however I have also got myoclonus jerks. For about 4 years I’ve had esophageal spasms which are very painful and the jaw jerks started earlier this year. In June I started getting hot palms, then I had a hip replacement early August. Next I developed hot. sore soles of feet (which come and go). Saw the neurologist he sai all tests were fine but the mouth and jaw issues are not good. I sometimes bite my cheek or inner lower lip. I have wide spread fasciculations and an electric wriggling feeling happening under my hip scar. I have some cramps in my toes and my calves feel they may go that way too. My sleep is awful and I’m on meds at present to try and get me out of this head space but nothing is working. I live in New Zealand where our population is 5.2 million so support is limited. I see the neurologist again Jan 19 2021. I was on a low dose antidepressant for over 25 years and have read thid makes me more likely to get Als ( we call it motor neurone disease in NZ). So far my speech is unaffected but I feel like its a waiting game. My poor partner thinks Im being so negative but I cant help the way I feel at present. Thanks for reading and all replies or advice is welcome x ps. After I came out of hospital I lost 3 lbs without trying and now I have to eat twice the amount to sustain my weight at 59 kgs. This was a red marker for me as I tend to put on weight not loose it.