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Active member
Jul 24, 2006
New York City
Hi everyone.

It's been quite some time since I last logged on. I do check in from time to time to see how everyone is doing but I haven't participated in the discussions too much lately. Sorry. I find myself getting sort of obsessed with all of it and then I have terrible anxiety when i think about ALS and my aunt too much. Hope you understand.

Anyway, my aunt has developed a strange symptom... i think it's strange, atleast! She has terrible acne. Large pimples on her face and in her scalp. Have you ever heard of this? Some of her therapists have suggested it's her body releasing toxins but they are causing her some pain and of course... i can't have that happen! Just curious if you've ever heard of ALS causing acne or maybe it's totally unrelated.

Love and best wishes to everyone. I've joined the ALS Chapter in New York City and I've been volunteering as much as possible. Also have started another walking team for the fundraiser on Long Island in September. I'm doing all I can to help move towards better treatment and ultimately a cure for ALS> wish I had the brains to do it myself! Darn. :)

Keep in touch.

Great that you are able to volunteer for this cause!

The acne? My husband has been having skin problems as well. I guess you'd call it acne. And also if he gets a scrape or cut it doesn't seem to heal up as fast as usual.

Don't know the reason behind this. Just figured it's another one of the glorious manifestations of the disease! Sarcasm intended!

Hi Nicole-welcome back. I'm not going to hazzard a guess about the link to the acne and ALS-anything is possible when her body is breaking down, I suppose. But I was wondering if there might be some environmental reason going on. Is your Aunt very impaired? If she relies on caregivers I'd ask if they use the same shampoo and personal beauty products that she always used. And I wonder if they shower her more frequently-or less(!) that her skin is used to. But I'm sure you ruled out all the usual suspects for skin problems...Cindy
Well, to be honest... I haven't seen the acne. My aunt just mentioned it in an email to me yesterday. We live so far apart, I only get to talk to her once a week (so difficult to understand so I have stopped calling everyday) but we email daily. As far as I can tell, her speech is majorly impaired. Her tongue has shrunk considerably. Her right hand is slowly being effected but it's barely noticeable. Hasn't worsened in the past 8 months.

In her email, she described that she has lots and lots of pimples all over her face and they hurt. She said they are also in her scalp. Sounds awfully uncomfortable. I have done a little homework online and can't find any links so I thought I'd ask on this forum. Everyone here is always so helpful. It's such a blessing, you know?

She doesn't have caretakers. She's still at a very self-sufficient stage. This July will be one year from her diagnosis. I wonder if the supplements etc that she's taking are causing the outbreaks. She's also been going through accupuncture treatments. Apparently her doctor was very impressed with how slowly the disease has progressed. He said she's virtually at the same point she was almost a year ago. She must be doing something right.

Thanks for the speedy responses. I am not going to get too worked up over the pimples. Maybe they will help her feel young again! ha ha ha. How is everyone else doing? And your significant others with ALS? I hope everyone is managing to enjoy the lovely weather... atleast those of you in the New York area...

xo Nicole
My money's on some sort of reaction to the supplements--they seem to be much favored by many PALS and their ingredients are almost totally unregulated. Depending on where she's getting them, she shouldn't even trust the ingredient list on the label. Acne is certainly not a symptom of ALS I've ever heard of.
I haven't heard of acne but some of us have talked about dry scalp and dryness in the ears. Not sure if that's ALS related either but maybe just another coincidence.

few months before my diagnosis I have notice like dry reddish itchy spots on my arms and legs
and at that time my doctor told me that it could be related to the cold weather, but now I am having them again in my arms and it is already a warm spring time.
Don't know if it is ALS related or just allergy.

Nicole-I had another thought. Is your Aunt in her 60's or older? She might want to go to her GP. It is unusual for an older person to have acne, don't you think? Cindy
thank you all for responding so quickly. i agree that it could be from the supplements.

i am so proud of all the work she's doing to stay strong and fight the good fight. of course she's realistic when necessary but for the most part... she'll try anything.

cindy, my aunt is 47 years old. i agree that it is very strange to break out like that when you're an adult. i am going to tell her about some medicated shampoos that someone recommended for her scalp. other than that, i guess she's got to get some oxy!


i'm so glad i logged on to the forum again. you all remind me of how many sweet and supportive people are out there. god bless!

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