PALS and our skin

[Lilacs53]

Hi Everyone,

I was wondering if ALS effects our skin or if not then maybe I need to see a Dermatologist? I have noticed some changes in mind. My right leg, which is my weak one, is starting to feel rough and has these little red bumps on it for below my calf to my ankle. The top of my shoulders are like this now also.

Is anyone else going thru this?

 

[Janie H]

I have psorisis and it has gotten much worse, I upped my vitamin D but since I don't see much sunlight it hasn't helped, it is mostly on my legs, looks like those pictures of the measles that you see on TV.

Janie

 

[gooseberry]

Steves skin is all wrinkly and dry...even scaley in places. I can put body butter or eucerin in the tub on him and within an hour he is flaking again. He drinks a lot, doesn't shower every day, uses a mild body was, takes luke warm showers, so noneof the usual culprits.

One thing he has noticed, and I do not say this to scare anyone,is that when he feels he is progressing and feels achey and fatigued, these are the times his skin issues flare and he also gets a really weird smell. When things seem to be stable, his skin is still dry but not as bad.

 

[Lilacs53]

Janie, it does kind of look like the measles on my leg, but not my shoulders. I too have upped my intake of Vitamin D3 and I don't get outside much either. I should at least go sit out on the patio for a little while during the day, but I don't. I wonder if there's something that can be done for your psoriasis?

Gooseberry, I'm so sorry your husband is going thru so much...this disease is horrible. I used to take a shower everyday, even if I was sick, but not anymore. Lately I have been taking one every other day mainly to save on my energy, but maybe it will help with my skin issues as well.

I wonder what the smell is from that your husband experiences?

 

[gooseberry]

I think its a.metabolic thing. He tells me I am a sensitive sniffer like I am a dog but I am very smell sensitive. The moisturizing body washes may help Lilac but I think a nice gentle massage with nice smelling body butter might make you feel better too.

Steve has to take 4000-5000iu to keep his vitamin d in a normal range. Its strange because he was outside all the time without sunscreen and at diagnosis he was low.

 

[Lilacs53]

Googeberry, my Dr put me on 5000iu also...its suppose to help with the ALS, just don't remember i what way. I take so many supplements that it's hard to remember which one does what...lol.

I'm smell sensitive too, can't wear perfumes or anything...wonder if there's a link?

 

[Janie H]

I have all liquid vitamins since my tube stopped up, more expensive but worth it. A nurse told me to try a tanning bed but I'm going nowhere until flu season is over.

Janie

 

[Lilacs53]

I have all liquid vitamins since my tube stopped up, more expensive but worth it. A nurse told me to try a tanning bed but I'm going nowhere until flu season is over.

Janie

I don't blame you there Janie. Are the majority of supplements available in liquid form?

 

[gooseberry]

vitacost dot com has many supplements available in liquid form. we use them because you can get many free of fillers and allergens.

 

[Janie H]

I don't blame you there Janie. Are the majority of supplements available in liquid form?

Yes, I have found them all, E, Folic Acid, D3,B12 and multivitamin. I stopped calcium, don't need it. Vitacost . com

 

[tripete]

Do you rub coconut oil on your skin? I do not have dry skin areas yet, but my wife uses coconut oil that she gets at the natural food store to massage me with as it is full of magnesium and potassium. Maybe it would help?

 

[Lilacs53]

Thank you Gooseberry and Janie, I will definitely make a note of that.

TriPete, I had been using coconut oil for a while, but it didn't seem to absorb that well, so I quit using it, but just started week or so ago using it again. It seems to help with my back and also skin problems that I was having on my legs.

 

[4tloml]

Thanks for the info on liquid vitamins, Janie & Gooseberry.

Gooseberry, is the weird smell a little like maple syrup? My husband has had that on and off for a couple of years now. I tried tracking it with blood sugar, but it doesn't seem to tie in with that.

 

[gooseberry]

Steves smell seems to track with progression. Sounds weird but there it is. We will notice the smell for a while kind of like rotting meat at times even after he has just showered and mostly from sweaty areas. Doctors have found no infection. We have found no change in blood sugars going up. Then he will lose a muscle or show signgnificant atrophy. The smell stops things stabilize. The smell comes before we see the atrophy.

For a man who had an a1c of close to 7 at one point they are now getting worriedbecause it drops every time it is measured. It is down to 5.3 and you wouldn't believe what he eats. This disease is very much a metabolic one. Diabetes, kidney stones, etc seem to happen out of the blue for our pals a couple years before the als symptoms show.

As a disclaimer, the doctors think I am crazy when I say this this and tell me it has never been proven in a study. I ask if it has ever been studied!

 

[affected]

No metabolic diseases before ALS for Chris.

He had never had blood drawn at all in his life and didn't know his blood type!

Gooseberry I do think it is another one of these cases where you may find others who have similar things that start to seem like a connection and yet the link just isn't strong enough. I know that none of the PALS I know locally have any diabetes either.

ALS definitely has a big metabolic impact even if it's not technical a metabolic disease as in it's onset.

Interesting how you have that smell come and go.