Any magical Safe Cures out there ?

[swalker]

My simple answer to the title of this post is "no".

I firmly believe that as a PALS you should have the right to pursue whatever you want. I think your pursuit is a wasteful use of precious time that could be spent in better ways. But, it is your time and you should be free to spend it as you see fit.

For others dropping by and reading this post, I suggest that you carefully review Laurie's response. I think there is great wisdom there.

Steve

 

[TIANDB]

TIANDB, I see nothing negative or "bee in bonnet" in Laurie's reply. She's giving good clinical data there to help you and others make informed decisions.

Hi Mike, I most certainly agree about the clinical Data.
Is it you who holds my posting back for hours and never a chance to edit if a misspell ? I have fast progression ALS I have not time for anyone's negative slant on things, Moderator's if they are giving precious time should try to be positive and most especially if they are not tainted with this horrid disease.
No offence intended.. TIANDB

 

[Atsugi]

I PM'd you, T, since it appears this is just a convo between us.

 

[Jlynn]

After having been on this forum since 2015 I can ABSOLUTELY say that Laurie is not being negative or dramatic but is trying to educate all of us on what may or may not work for Cals to make all of our lives easier. She is one of the most helpful members on this forum (and there are several). At the very least if you don't like the advice just say thanks but no thanks. Do not be insulting. You do you Laurie. Your awesome.

 

[TIANDB]

Melatonin a decent sleep aid and maybe more ? I take 24mg before bed it is apparently neuro protective, anti ageing and more . I will point to an e book by Jeff T Bowles. I will link an interesting blog if allowed below. It is about Alzheimers but the comments are worth reading.. Best luck all..

 

[affected]

Definitely search here on Melatonin and you can read back on past discussions. It seems to give rather varied results. Do you discuss trying these things with your doctor to be sure there are no contraindications? eg Melatonin should not be taken if you are on medication to reduce blood pressure.

Please let us know how you go with it - how long have you been taking it? You didn't say whether it is helping you sleep? Any side effects?

 

[TIANDB]

Definitely search here on Melatonin and you can read back on past discussions. It seems to give rather varied results. Do you discuss trying these things with your doctor to be sure there are no contraindications? eg Melatonin should not be taken if you are on medication to reduce blood pressure.

Please let us know how you go with it - how long have you been taking it? You didn't say whether it is helping you sleep? Any side effects?

Hi.
I am not on any Doctor prescribed medication excepting recent ropinirole .
My doctor is fine with me taking melatonin.
It does help with my sleep as does Ropinirole.
No side effects for me anyway with any of my tries so far.
If I didn't try I would just wither and die.
No offence intended.. Take care.. TIANDB

 

[jethro]

@tiandb when i was diagnosed with als, i bought many supplements, like all other pals do on youtube. nothing helped, really. dismissed almost everything, except q10, creatine, alcar, b12 and some esential things. i will use all supplements which remained, cause i will die of non-als if i throw them away now.
anyway, all these months i am trying to get something which is not popular. there must be something. everyone has its own way.
considering:
1. LDN
2, mix 1:20 - thc:CBD via vaporizer, THC oil for me has incredible power with coughing, can not explain...
3. ayahuasca (something after alternative). i think that there is one case described in ncbi. check it...
4. ropinirole and antiparkinsonians
right now i am taking self-made ibudilast coctail cause was not able to import legal one.

what killed me? i called medical center and asked them if they want to take my organs for free after death. they were interested untill i said that i have als. they were frozen in a second and not interested anymore. that way i found out that i dont worth even cent.

forget about "100 pills a day" and everything expensive. liver has a certain capacity. what it doesnt use, you will pee...
stay well friend,
j

 

[David]

This thread is being closed.

There are no miracle and magical cures for ALS.