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Karigav

Active member
Joined
Oct 10, 2010
Messages
33
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Ky
City
ky
Hello again all! I am finally back with an update on Dad. He went to neurology today for another EMG and they did an EEG as well. The docs did say whatever he has is nerve related, not muscular. Tommorow he is going for more blood work, and setting up times for further testing. They want to do a spinal tap, MRI and xrays. We knew we wouldn'tget any answers today, but I still can't shake that ALS may be the cause. One other thing, his syptoms have seemed to halt, with the exception of the weight loss (now at about 75 lbs) and extreme fatigue. It takes everything in him to eat 6-7 bites at dinner before he is to wore out to continue. He cannot dress himself, shave, has difficulty showering and feeding himself. His legs, breathing and swallowing seem to be unaffected so far. This is making me wonder if it is some kind of cancer (the doctors mentioned whatever he has is rare)... I don't know what to think. Has anyone heard of symptoms just stopping that have ALS? I know it affects everyone differently.
 
Hi Karigav,

Did your dad have any abnormalities in his bloodwork..like elevated White count or ESR anything? Also what teaching hospital is he being seen at? If it is rare, the hospital is key to the diagnosis. I wanted to comment to say that in ALS symptoms can plateau but for symptoms to just go away, no they will not. When ALS sets in, it is continuous. I have also heard from experience that due to the nature of denervation/reinnervation that it is possible in the early stages of the disease to regain some strength for a 6 month period but it is such a small gain that most of the time it can go unnoticed at all. How long has your dad been experiencing these symptoms?

I am so sorry your family is going through this and I hope they will find something else while he is in testing. Lastly what did they find on the EMG?

Sorry so many questions, I'm not a crazy or anything, I have a diagnosis, I am a Pre-Med student and observer for a neuromuscular specialist with an interest in rare diseases. If all the questions bother or upset you, feel free to tell me to buzz off :)
 
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