Recent content by loralie

Hello Katie, I came across your post saying your husband had ALS/FTD ... and the variant "flailing arm syndrome" ... My husband was diagnosed with ALS and later with FTD four/five years ago. Both are slow progressing ... and just this week the doctor for the first time mentioned "flailing arm"...

Thank you Rose. :)

Hi artist09, it really is comforting to hear of other people with the same thing, isn't it? I am sorry to hear about your dad. As far as our twitches .. it seems weird because never ever in my life before has stressed caused twitches/fasciculations in my body. (and probably not in yours...

About FVC ... when people say what it is, are they quoting the seated one or the supine (lying down) one? My husband's is 53 when sitting, but 28 when lying down. He can only barely get through one try while on his back. (He can't ever be on his back or lie down anymore without a bi pap).

I just re-read your message and am sending another reply. I'd be interested in the ONE study that you found. (about relatives/caregivers who develop symptoms). It sounds interesting. Your symptoms sound scarier than mine, since mine are limited to fasciculations. How are you now? How old...

Daphne, I am so excited to see your question. I've had this same question myself. I have no chance of it being hereditary ... it is my husband who has ALS. He was diagnosed three years ago, and I have had fasciculations for three years myself. I do not fixate on it ... I've been much to...

Hi, It was exciting to see you and a couple of others on here who have spouses with both ALS and FTD. I don't get on here very often but I'm always impressed by what an informative, loving forum it is ... people bonded together because of illness, hope, determination, fear ... The combination...

Stephie, I thank you as well. I am sorry for your loss. Your words hit home for so many ... the idea of searching this site for answers, to try to envision what is ahead. Thanks for being there for people who follow you and your husband. My husband also is living with ALS on his own terms...

Thank you for your reply. I'll go back and read your other post. I have read a lot about the great Lyme Debate in the past two years, off and on, not knowing who and what to believe. Just recently watched the movie "Under Our Skin." Many things in my husband's case do not fit Lyme, but enough...

Sorry to have confused you. The ALS specialists did not diagnose him with ALS based on twitches. When we went to the ALS neurologists after a general neurologist suspected ALS, they (at two different ALS clinics) said it was likely benign fasciculation syndrome, which is what I thought (based...

one thing of comfort to those with twitches who have a clean EMG ... although my husband had twitches without weakness for months or years, he never had a "clean emg." although they didn't diagnose ALS for a time, his EMG did show abnormalities.

Hello Joanne, I have hesitated to write this here because I don't want to freak people out (who are worried about fasiculations). BUT. My husband had fasciculations all over for more than a year before he was diagnosed with ALS. Even after his first diagnosis, I was positive he didn't have...

Hi Shelley, I'm sorry for what you are dealing with ... I want to reach out because of some similarities. My husband was diagnosed with ALS a year ago ... a very slow progressing kind. the much more worrisome symptoms have to do with frontal lobe ... he was dx with mild seizures before ALS dx...

My husband is gaining weight every month. (He was diagnosed in august of 2008). He says he is starviing, especially in the afternoon and through the evening ... so he eats and eats and eats. He has gone from 175 or 180 to 205. (big belly and all). I know that everyone says he shouldn't try...

AndyDJX, I understand what you are saying and I am sorry for what you are going through. The fact is that having no answers, being in limbo and wondering, is really tough. You know that something is going on with your body ... you are not inventing your symptoms ... but there is no name for it...