I came to this sight 2 years ago.. scared out of my mind. I suffered from major depression and panic attacks.. I was twitching in every muscle in my body (still do some) I swore I saw atrophy.. (still feel I've lost muscle).. I thought I was 6 months from death.. That I would never get to see my...
Of all the things I’ve lost, I miss my mind the most.
This week a letter arrived from the Neurologist who last month uttered the incongruous phrase, “It’s too soon to know”. Coming on the tail end of a taxing (but exhilarating!) 30 hour sojourn his letter sucked my remaining breath away. The...
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After so much crying like a leaky faucet, Made an appointment with the Dr to try to get me something for my nerves and hopefully I can deal better. Dr Glass from emory has still not given us an appointment for 2nd opinion. Will follow up with that tomorrow and try to push it along. My son and...
A friend of mine is definitely risk-inclined. To look into his eyes, the bright centre of his vaguely unkempt person, is to peer over the rim of the cliffs and cascades against which he continually pits his mettle. A climber, adventurer, horseman; he's the fellow who gets a mechanic mate to cut...
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Well I went to Cleveland Clinic for my second opinion I was hopeful they had more information or some other new research. Their website gleams with the promise of a "team approach" to diagnosis and treatment. What a ripoff! I saw one neurologist who kept us waiting over an hour came in said...
2nd opinion
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Has anyone ever had an experience where your PALS was living in your home... but refusing to tell you anything? What doctors or therapists say for example? My mom has completely cut off her family from her doctors. She's instructed all of them to not reveal any of her information. She's even...
OK, here is my situation. My dad is in the process of an initial diagnosis for ALS. We are still awaiting bloodwork and MRI results, EMG is done. His neuro seems pretty convinced for ALS, but has yet to get us any breathing assistance. My dad spends a lot of time both worrying about his...
This is all I was going to post but I got on a roll: Has anyone had fascics that turned into spasms (no longer little annoying twitches)?
Tuesday is my second appointment with the Neuromuscular Department. I am assuming I will have another EMG. My neuro has been checking my tongue each time :(...