[Mimi]

this is scary because even when the EMGs are normal, it is possible that later the diagnosis of ALS will still be given at the end.
I wonder if EMGs are normal or if doctors can't read them well?
This disease is really cruel, it kills us but first makes us live a nightmare even to be diagnosed.

[Mimi]

Hi,

I m so sorry to disturb you. I want you to be sur I didnt write for pleasure.
please excuse me. I feel in a desperate situation. I am Swiss and my English is not very good. But I will try to explain my situation to you. I think you are in a good position to know how hard it is to be sick and unanswered.

I m a 26yo (soon 27) swiss girl. I m single and live alone. I m a nurse. I was also an athlete, I m a boxer and I made sevral fights. I was in a perfect shape and I never had any health issue before (mental or physic)

Until early march I m struggling with weird symptoms.

It’s begin in early march. During a boxing training I feel my arms were very tired, I thought it was a bad training day. It happen sometimes. Muscles aches last for one week and I also have low back pain and shoulder/neck pain. Like it s contracted, cramped. Few day later I have shortness of breath it s seems to happen randomly (no cought, no fever). I tought I had the covid19 but the test came back negativ. I continue working thinking I had a flu or a cold. Pain and random shortness of breath continue. I go back to my general Dr, he made the current blod test and little more (lyme and other current infectious diceases all came back negativ). Fasciculations appeared, I don t have much and they don t last long but they appear everywhere on my body (legs, arms,abs,rib cage, tongue, face). I also have bad cramps every where (same places as the fasciculations). I also feel my muscles are stiff. And also experience constipation from early march. I feel also a lot of muscle fatigue and also general severe fatigue. Like I need to sleep but I can t have a restfull sleep.
From early june sorthness of breath increase and I can t sleep because I feel I can t breath and it s wake me up.
I went to the ER 3times because I felt bad and I want an answer to my problem, I started to be anxious there is something seriously wrong with me. They made chest Xray, all the cardio test,… everything is normal.
The tird time I went to the ER the keep me in hospital for one week, make tone of blood test, pulmonary fonctions (little bit low but they don t seems to be affraid of it), EMG (arms and legs), brain MRI. They conclude: anxiety

From their I take an appointment with a psychiatrist, I take med against anxiety and an antidepressent. I try relaxation, breathing exercises,… (they make me feeling worse because I m feeling like I choke)

Everything go worse and worse and I m hopless.

Neuro conclude: no clinical weakness, no atrophy, normal reflexes,… despite I feel weaker and weaker and so tired. Everything is harder, breath went worse. Cramps are worse specially in low rib cage, abs and throat. But also in legs.

I think my case is so atypical because I m so young and also maybe because respiratory onset is even more rare.

I can t work any more, I move to my mother.

Please can you share your experience with me. If you have any suggestions I m open minded.

Thank you so much for your answer. Be sur my intentions aren t to be rude or unpolite.

be sure that I send you all my support and all my thoughts.

Camille