Feeling very sad/hopeless

[skipper66]

My sister took my dad to see his ALS specialist for a check-up today. My dad has been extremely fatigued lately. So, I do research and more research trying to help him. So, I saw posts about the drug Mestinon and a guy goes on and on about it being a miracle drug for him on here. So, I get my hopes up only to hear my dad's ALS specialist tell them it doesn't help at all. I wish people wanted write a bunch of B.S. on hear and give people false hope. I am still holding out for a miracle until my dad's last breath but in the meantime I prefer not to hear from a bunch of phonies about their fake cures. I'm pretty mad and upset today. Kim

 

[panguinjen]

Skipper,
I'm sorry! There are snake oil salesmen everywhere and if it was easy and worked far more people would be on the bandwagon...I started believing things would get better and I'd look for all this funky stuff and the neuro asks me now what are the quack cures out there....she says I'm the best source she's had for outlandish cures and methods...she shakes her head and explains why they all don't change anything... So someone may have something out there, we just haven't heard it yet...
Kim, your dad has taught you well, you are a strong woman! Have faith in yourself, we do!

Jen

 

[vzandt]

Skipper you have to remember that what might "help" one person might not help someone else. The mestinon might have really helped that poster. The b-12 might help another. A vitamin might help. A tuna sandwich and a salad can give some people energy. So can a cup of coffee or a 5 hour energy drink
Maybe they are giving you ideas for things to try...what worked for them. What helped. They maybe weren't trying to scam you. Nothing that we know of is going to cure this. We are just trying to help each other the best way we know how. So everything you read is a thought..or opinion ...or feeling... we have to take and fit them into our world to be used or discarded.
I have gotten a lot of very good information off this site and a little I have discarded..but it has been a lifesaver for me.

 

[mich5]

Yes, Skipper, I agree with vzandt. Some medications really work for some of us and don't work at all for others. I've had a lot of trouble with neu dex ta but it works great for others. I find it's a good idea to see my doctor with various options I've come across for help with specific issues I'm having and then he and I discuss which to try with my specific regime of other medicines and allergies. Don't give up. Continue to do your research and offer suggestions to your dad. You WILL find some ideas/things that will end up helping him with some of the issues he may have.

 

[jamiem]

Oh Skipper, mestinon turned my speech around for about 3 weeks and then nothing. I thought it was the wonder drug and during those three weeks if I had been part of the forum I would have written that it was the wonder drug,

 

[momap53]

One of our members does take a small dose to help combat her fatigue with some success. SHe has never posted that it was a "cure", only that it provided some symptom relief.
Vzandt was right on with her post.
Don't lose hope!