Thank you for sending me the link to your blog. You have a beautiful family! I admire the strength and courage you and your husband are showing through all of this. Despite your challenges, you are still reaching out to help others such as me, who are confused and frightened because of lack...
Thank you for responding. Did you have muscle twitching throughout your body? Can you explain the weakness and atrophy in your hand? I have had difficulty opening some jars. My hands do not feel as nimble as they used to. I am not dropping things, but my 4th finger and pinkie finger on both...
Just recently, I have started having painful cramps in the bottoms of my feet (muscles or tendons pull from my big toes all the way down to my heels along the inside edge of my arches) and also in my right calf. They have woken me up at night but I also have them during the day.
Lately when...
Thanks to all of you who responded so quickly to my questions. It is comforting to connect with people who are compassionate and so willing to help. THANK YOU! Laurie H.
Hi, Lori. I hope that your husband is doing okay. How frightening for you to take him to the ER and then find out about ALS. How did you know to take him to the ER? How is he doing now? I am glad that the BiPAP is helping him. What is the best sleeping position for him? I am struggling to...
Thank you for responding. How long did it take your husband to get diagnosed? What were his first symptoms? I have not been diagnosed but am seeing a neurologist and pulmonologist. So far, they have given me no clear answers as to the cause of my clonus, hyperrelexia, breathing problems...
Has anyone experienced this? It is getting harder and harder for me to sleep at night. Even though I prop myself up in bed with several pillows (I am almost in sitting position), my breathing muscles do not seem to work right. It almost feels as if my lungs are going to sleep. I get a...
back
bed
bilateral clonus
breathing
burning
clonus
fvc
hyperreflexia
muscle twitches
muscles
night
pain
pulmonary function test
respiratory
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symptom
symptoms
test
twitches
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I will be thinking about you and hoping you are doing okay. Is there a specific doctor that you recommend from Mayo? I am on a waiting list for the neurology department, with no clear idea when I will get in. How long did it take you to get in? What symptoms did you have? Can you explain...