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New member
Jan 31, 2018
Friend was DX
Hello everyone. Before I begin I'd like to apologize in advance for potential grammar mistakes because english is not my mother tongue.

I'm here because of my friend who has been suffering from symptoms which are very similar to the symptoms of ALS for about a year now. I'll try to describe it shortly in as many details as possible.

- His symptoms started about a year ago with a chronic hoarseness which didn't go away
- After 3 or 4 months he started feeling weakness in his right hand (he couldn't lift it above his shoulder, couldn't swim with it, lift heavier objects etc) which was followed by significant atrophy of the same hand not long after that.
- One of the symptoms at that time was that he couldn't sleep in certain positions because his neck felt very weak too. For example if he slept on his back he couldn't lift his head when trying to get up without a help from his left hand.
- after a month or so he started exhibiting swallowing difficulties. Few times when I was with him he almost choked while eating popcorn or similar nibbles. Also, his eating was way too slow. For example I would eat a meal in 10 mins while it would take him 3-4 times longer to eat the same amount.
- 2 months ago (about 10 months after the appearance of the first symptoms) he couldn't eat nor speak at all (only 2-3 words which were barely intelligible). It's only then when he went to hospital where they checked him and installed a feeding tube through the throat. Doctors told him that the most probable diagnosis is ALS, however they couldn't be sure before additional tests and findings.

And now, approx. a year after the appearance of the first symptoms he lies in intensive care because of breathing difficulties (he is connected to respirator), unable to breath, eat nor talk. He lost 20 kgs, and he is still able to walk although much harder than before. Doctors are still unsure of his diagnosis. They recently told him that it's some kind of MND disease but not ALS and that they still don't know the exact type. I'm extremely worried about him because time flies by but he is still waiting for the correct diagnosis connected to respirator and feeding tube. If it's some curable disease, the time could mean the difference between the life and death.

What are your thoughts on this? What could have such grave symptoms apart from ALS? Thank You in advance
Whether it is ALS or some other motor neuron disease, the prognosis is poor given that his breathing has declined to the point he needs a respirator. No medication would reverse it. If it’s not a motor neuron disease, it’s possible there could be an underlying malignancy, infection, or other neurological condition. His doctors should be able to sort through that with all their testing.
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