If I Could Give Just One Symptom to

[brooksea]

healthcare professionals for just one day, it would be.......ITCHING! There is absolutely no reason an ALS patient (pALS) should be suffering from something like this! I do not understand why the docs will not prescribe the recommended drugs for this problem or recognize it is a NERVE problem not a SKIN problem!

I mean, this is the one symptom where a remedy exists! Of course, what works for one may not work for another. But, this symptom can be controlled with a simple pill, such as Tegretol or Neurontin. For God's sake, its on the MDA website in relation to caring for skin.

On my own, because the nuero wouldn't help, I've tried over 16 different experiments to try and alleviate my husband's itching to no avail. We went to his primary care doc and she prescribed Atarax. That didn't do a damn thing. Now it has gotten so bad that I can barely sit my ass down before he needs to be scratched with a "military cut brush!" This has gone on for years now!

So, I took him to a dermatologist today. LOL Don't know what I expected when I handed him a list of all the things I had tried and the print out from the MDA website! Silly me! I thought he might actually listen. The last thing on my list was hydrocortisone cream. The first thing he asked was, "Have you tried any hydrocortisone cream?" :roll: He wouldn't look at the print out from the MDA. So I got up and read it to him. That's when he went into that mode. You know the one I'm talking about: Thinks to self, "Ahem. Who the hell does this chick think she is, I'm the doctor here. Another one of those internet research nuts! How many more will I have today? Time to go into ignore mode."

So his diagnosis? Rosacea. Of course he has rosacea! He's Of Irish/German decent. I have it too. But it doesn't ITCH!

Anyway, he was prescribed a steroid cream and I was told to buy OTC Cerave to apply after the steroid cream. This will be our 2 week experiment.

 

[10steps]

I'm sorry you have to deal with all that nonsense. Like you don't have enough to do. Maybe call the primary and just tell her what you want perscribed.

 

[trfogey]

Listening and an emphasis on patient comfort, as opposed to "me doctor, you moron" is the biggest breath of fresh air I've enjoyed since going on hospice. One phone call -- one remedy. And they'll keep trying different things until they find something that works.

I wouldn't take a million bucks for the hospice nurse I have now. Not only is she a genuine and caring person -- she moves heaven and/or earth to get her patients what they need for comfort.

 

[brooksea]

Allen, If I can get the damn clinic to respond to my emails (phone calls are useless, at least I have a paper trail for what it's worth) I will ask her to include whomever I need to speak about hospice at the next visit. I hope to get an appointment on 10/7.

I'm glad you are being made comfortable and hope you remain so. I'll have to check later to see if anyone pissed in your cornflakes!

 

[mysticunicorn66]

yep. know where you are coming from. my sis is always itching. have to ask the hospice nurse about that. sis is already on neurontin, but that isn't helping...it is for the nerve pain, but not the itching.

 

[Barbie]

my husband has an itchy scalp--drove me up a wall so I sympathize! I started pouring hydrogen peroxide on his head after washing his hair--and he doesnt itch anymore! don't ask me why and please don't anyone tell me this is a bad thing to do

 

[tdodson]

We asked Mom's neuro about itching scalp the last visit and he said it wasn't related to ALS. REALLY? I don't understand why they don't get it. We might be trying the hydrogen peroxide trick soon, or at least something. Her head itches all the time but it can't possibly be related at all to ALS since everything else is fine! Sometimes I wish doctors would just think and try to put themselves in PALS shoes for a day.

Todd

 

[brooksea]

Why hydrogen peroxide?

 

[KKay]

Wow! This is weird... my husband's scalp itches ALL the time! I dont remember it ever itching before, or him itching it. Going to try the peroxide.

 

[pmbenb83]

Same here. He itches ALL the time! I feel so bad for him. We also asked his neuro and he's never heard of it. With so many people compalining about this, why don't I believe him?

I'm definitely going tell my husband about CJ and Daddy O's trial and the hydrogen peroxide Barbie is using on her husband's itchy scalp. At this point, I'm sure he's ready to try anything.

Thanks for the tip!

 

[LauraW]

OMG Mom itches ALL THE TIME too! Yes, as soon as I get comfortable....and I have scratched so hard she has marks. when she can reach it she makes herself bleed ! I have to switch her primary....did I tell you i was "fired" from my dr? Yes, i guess he didn't like me telling him what was wrong with me and when I wouldn't follow his orders I got a letter saying that he could not longer be my dr. Since he is Mom's too, I have to find her a new one. Why do they all thik they are GOD? I am supposed to do what they say even if I know it will harm me or Mom?! So stupid! Yes, I agree. i would give them itching too!

 

[mysticunicorn66]

I'd give the itching to the clueless ones, but for some, I'd give the not able to speak. Especially, those ones who think they are GOD and know everything and we are just a bunch of stupid idiots. I actually "fired" one of my sister's doctors (neuro dr) because he was being a jerk and would not renew her Rx for her pain pill. I simply told my sister's primary care dr what was going on and he wasn't too happy with the other dr either. I told him that I don't care if the other dr was the only neuro in town, she would NOT be seeing that sadistic creep again. To that dr., yeah I'd give him the "no speech" part.