Signe
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  • Hi, I was reading some of your post and I was wondering if the salty taste you had has ever gone away? My mom had this symtom along with ALS symptoms (muscle weakness, couldn't walk or even turn in bed alone) and it turned out to be an adrenal gland tumor and it caused Cushing syndrome.. I'm just curious if you've had your adrenal glands checked?
    Signe
    Signe
    I still have the salty taste, it is awful. I will ask specifically about adrenal glands, but as far as I know they checked every. If I could solve the taste thing I'd be much more comfortable.
    M
    Mhinz
    It really bothered her as well.. She couldn't eat anything without it tasting too salty. She was in the hospital and rehabilitation centers for a year but thankfully she's pretty much recovered at this point. It took a lot of testing to finally get the diagnosis. They actually spotted the tumor on an MRI of her lumbar spine, if they wouldn't have done that then they would have had no idea. It's very hard to diagnose
    You can mp me if that can be of any help. I live nearby.
    Signe
    Signe
    I was wondering if you were in Paris. I'm traveling with my daughter and granddaughter. I'm meeting up with my foriegn exchange girl from years ago. My only issue is I hope places have AC. I don't know how to mp, on here. I'll have to study that. Thanks for the offer.
    MarieLaure
    MarieLaure
    Don’t know how to mp either but maybe the moderators can let you have my email. I live near Paris my dad lives there. I go almost everyday. As far as I know only some places have ac but the heat wave might be over when you get here
    ShiftKicker
    ShiftKicker
    I've sent a pm to you both in the hopes that enables communication. If not, we'll give something else a try!
    Please know you are not alone, and it is more likely that you will receive good news than bad news when you go to the ALS clinic. I have an appointment with the boston clinic in november. Also, definitely check for lyme, I had a negative test but am doing another thats supposed to be more extensive and accurate. Please feel free to reach out if you ever want to chat. take care, Jeff
    Hi Signe, Good evening. I am sorry you are dealing with this. I'm reaching out because I am currently exhibiting some concerning symptoms and am worried about FALS as well. Doctors and folks on this thread have been telling me I may be having a PTSD sort of reaction as well.. So good news, that does exist, particularly in those that have watch a loved one succumb to the disease. My mother died of ALS at 52. I am only 26 and have been experiencing fasciculations throughout my whole body, clumsy hands with poor dexterity, dropping things often, stiffness in my neck, and weakness in both legs. I wanted to offer you moral support as it can be lonely going through all this. I started to notice my symptoms 3 months ago and in hindsight can trace them back about 6-8 months.
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