We are stuck and need advice

[samnikolep]

I have had 2 accidents now and I just dont understand how it's not ALS related. Both now I have been in the bathroom on time but as soon as I see the toilet I cant hold it anymore and it all comes out. Is this normal? Plus my hair is so greasy and my hair on my head and eyelashes are getting these little white fuzz ball like things on the tip of them?. Again normal? I only take riluzole and gabapentin for my cramps... any advice would be great. Thank you!

 

[affected]

I thought you are a CALS (some caring for someone with ALS)?

 

[Firefighter58]

Hello there, I have exactly the same problem, not all the time but it happens without warning..I also take Riluzole, but I have been taking that for about 4 years, this problem started about a 6 months ago. My wife bought me “Depends”: a type of adult diaper that I now ware all the time,they save a lot of mess. I also found a build up of ear wax, and my Face seems oily.
Al

 

[notBrad]

I had the same problems. My doctor put me on vesicare for the peeing and desinide for the skin problems. The skin problem is like I am peeling but the stuff I am " shedding" is way too thick. It is like I'm shedding the top layer but it isn't quite that thick. The dermatologist said the als tends to exacerbate it.

 

[Clearwater AL]

samnikolep, you have started 3 Threads. The first two were concerning the one you are a Caregiver for. Many of the symptoms you wrote of were hardly ALS related to include asking questions concerning erectile dysfunction.

To help us, are you writing about the one you are a Caregiver for... or yourself?

 

[samnikolep]

First off does this really matter? Second off we as a couple use this site. Seeing as we are a team I posted the 1st 2 and reed the one with the diagnosis of ALS posted this thread. Thanks so much for the help.

Unfortunately we got the diagnosis last december and we are trying to reach out for support. We are in our 20s and this is all VERY new to us. And none of these symptoms should be happening to a 20 year old.

So much for a" helpful" sight. We are trying to do our own research since our doctors dont and we have been told that this is a great forum but clearly not you are to worried about people not having ALS to ask questions.

After my first post someones comments were so rude and hateful how his symptoms are not ALS related I didnt even want to ask anymore questions but I thought I am just to emotional right now. But after this... to the 2 people who are concerned more about who is asking the questions then answering them **** YOU! to the 2 people who did answer thank you so very much!! I appreciate your input more than words can Express.

I will try to see if he will try depends but I know how hard headed he is... it's hard to convince at 28 year old he needs them. Life is really really rough especially facing this horrible disease and not having anyone to help answer our questions makes it even more difficult. I will pray for you all and this will be my last post.

 

[lgelb]

I'm sorry that you feel offended. We recommend that people not share IDs so that our members, many of whom have difficulty reading and scrolling, can keep things straight. And yes, this site has been abused by trolls and worse, so we do ask who is who and what is what, for our members' protection. I'm sure you can understand that.

For the same reason, we don't condone name-calling, either. We're happy to support P/CALS who are civil and want to help each other; that's all we do.

Best,
Laurie

 

[DrDark]

stuck and need advice

samnikolep posted some good questions. Most of the population that I used to work with had some type of neurodegenerative disease. Seborrheic dermatitis is a common comorbidity with these illnesses. The topical corticosteroid can be helpful, but you may want to try a few additional measures. A dandruff shampoo and comb or brush during your shower can be helpful if your scalp is involved, and I use it on my beard, as well. A soft brush or rough washcloth can be used on the face with a mild soap such as basis. If you have difficulty keeping it out of your eyes, baby shampoo can be used there. Sometimes a Rx skin cleanser can be helpful. I try to minimize the steroid use whenever possible, but as long as it is a mild one, it is safe for Intermittent, short term use.

The other complaint you may be experiencing sounds like urge incontinence. 20's is kind of young for prostate issues, so I won't belabor that. ALS can increase detrusor muscle tone, exacerbating that urge. Always consider lifestyle choices first. It was difficult, but I am down to just one cup of coffee a day now. All of the meds for urge incontinence that I am aware of are anticholinergic, with the exception of one. They can cause dry mouth, constipation, and other issues that may be more problematic in older people. I found the dry mouth intolerable, so my dr put me on the one exception, myrbetric. I also try to distract myself from the urge, and wait until it subsides before I stand up to go. I keep a urinal at bedside and when I travel.

There was also mention of ED. With all of the stress that comes along with a life changing diagnosis like ALS, this should come as no surprise. There are actually scholarly papers about the potential merits of PDE5 inhibitors like sildenafil and tadalafil in the context of neurodegenerative disease. Generic sildenafil can be purchased from US pharmacies for as little as 24 cents per pill now. It is unfortunate that there is not more discussion about sexuality and ALS.

Best of luck to you! Don't give up on the forums. There are many helpful people here.