Thanks but no thanks!

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Sammantha

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Thanks for all the support everyone. Well most of us on here have been ill for quite some time and if you are anything like my family, then you have been receiving the latest and greatest cure all items out there. Besides viatmins i dont touch them. My grandmother ordered this stuff called miracle mineral solution or MMA? She keeps calling me wanting to know if i have started drinking it, now i love her but i am not going to drink this stuff. My mom started it and said that she is feeling more healthy? It comes in a box with a solution, little pieces of silver looking foam and a bag of citric acid... How on earth is this suppose to help me, if i drink this stuff the doctors will blame my problem on that! How do i let my grandmother know how much i appreciate her trying to help yet not hurting her feelings... She sends this stuff left and right! and its expensive! Sam
 

Zaphoon

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Sam,

When it comes to that sort of stuff being dished out to me, I always like to try a little of it on the doggy. If the doggy has a bad reaction, I know to stay away from it!:lol:

Zaphoon

P.S. It will work with cats, too!
 

BethU

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Hi, Sam ... how to let your grandmother know you appreciate it and not hurt her feelings? What I do is lie.

"Thank you so much, that's great. I'll try it." Then pour it down the drain. You have to be careful with these kinds of lies, however ... you don't want to be so enthusiastic that you encourage her to send more.

Or, "I tried it, and I had a bad reaction to it."

Another good lie is to say, "I asked my doctor about this, and he/she said it's a good product but it's not appropriate for my case."

Or ... "My doctor said I am not supposed to take any supplements during this phase of my treatment." You can blame almost anything on your crazy, kooky doctors who just won't let you have any fun. Be creative.

(Kim ... the problem with trying something out with cats is that they always take their revenge, like throwing it up on your bedspread. Better stick to doggies. :))
 

awieleba

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Well. I wouldnt do much before the surgury but after why not take it? I wish that someone would buy me expensive vitamins! It wont hurt you ( I dont think, your mom seems fine) and it may not "cure" what you have but if you can get your immune system in good shape that cant hurt.

I use all kinds of homeopathic things. I went to wholestic docter 15 yrs ago when I was diagnosed with epstien barr, and I was sick with a chronic fatigue type thing for over a year. After I went to this lady and took her supplements...I felt alot better. I was better. It could of been a coincindince, I am open to that.

I dont think it will hurt.
 

Tfisher

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BethU
Still getting used to this forum, my response is not to this post but I just wanted to chat with you a bit. My mom had a diagnosed of bulbar onset in june 08 but had symptoms for a year before. Tomorrow she is having her feeding tube put in.
Tfisher
 

BethU

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Hi, Tfisher ... thanks for "befriending" me. And welcome to the forum. I'd be glad to chat.

Let me know how the feeding tube procedure goes with your mom. She and I seem to be at about the same stage. I think I'm going to ask for the tube at my next clinic appt in December. It is just too much hassle to try to eat. I'm also going to go on Bipap next month, too, I think.

I'll be thinking of your mom tomorrow, and sending good vibes her way.
 

Altair

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ALS Clinic

Hi Beth U

I noticed that you referred to your next clinic appt. I was wondering which clinic in L.A. that you use.

My wife was diagnosed with PMA in April and I think it has progressed, either into or close to , ALS now. She has experienced significant changes in her ability to stand or do most anything in the past three weeks.

We received the PMA diagnosed at USC near downtwon L.A.

All the best.
 

BethU

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Hi, Altair ...

I go to UCLA (I live in the Valley so it's not too far), which seems to have an excellent clinic. However, I was diagnosed at UC Irvine, which would be closer to you than USC, I think. UCI has a comprehensive neuro program, and they seem to be top-notch. They also have an auxilliary clinic in Long Beach, but I'm not sure if they handle ALS patients there.

I hope your wife's condition stabilizes. Good luck to both of you. Fingers crossed that it's not ALS.
 

Tfisher

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Hi BethU,
The procedure went well today and they did use the tube for a feeding about 6 hours after which she tolerated very well, I've heard some do not. She thought that it was very simple to use and I'm hoping/thinking she will feel much better with better hydration and the added nutrition since she has become so weak in the past month. She can still eat but has trouble with some choking and trying to take meds so now she can just eat for enjoyment and less pressure. Thanks for the good vibes!
Tfisher
 

Kevinski

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tell her the truth

Hi kevin here ,i have been diagnosed with bulbar onset als.And i too have had family and friend give me stuff to take and tell me what i should be taking,the only reason they are doing this is they care and want to help.Some things i will take like some special vitamins ,which I cleared thru my neurologist.But for the most part i just say thanks for the concern ,but i have my own treatment rgime.there is so much junk on thr internet promising cures for everything.And they try and pray on people that have terminal diseases....goof luck
 

BethU

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tfisher ... thanks for the update! I'm glad it went well. I think when I get mine, I will do the same as your mom ... use it for meds and basic nutrition/hydration, and save my taste buds for treats (and Diet Cokes :)).
 

Tfisher

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BethU,
You can drink carbonated drinks? My mom chokes on anything carbonated or anything with alcohol. I thought maybe she could enjoy an occasional ice cream drink but anything with alcohol will take her breath away and make her choke.
 

BethU

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Yes, I can drink carbonated drinks ... in fact, it helps me with swallowing. I can get pills down better with the cold fizz. It seems to cut the thick saliva.

I haven't tried alcohol, although I have debated "launching" my tube when I get it with a shot of Bacardi in the tube and Coke by mouth and let them meet up in my tummy. But that's probably not a wise idea ... :)

I drink ice-cream milkshakes mixed Ensure and protein powder for most of my meals, and I think that the ice cream seems to make my saliva thicker. It may just be my imagination. But it tastes so good, and has all the nutrients, so I'm still drinking them and dealing with the thick saliva separately. (I take Musinex for that)
 

Tfisher

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I have actually heard of people putting a cocktail down their tube and some say they can actually taste it. I think I may see if my mom is interested in having a margarita together once the dust settles.

I'll have to keep the Musinex in mind for my mom to think about. I have also thought about having her try an antihistamine but I'm not sure if that would react with her other drugs.

Do you still eat small meals of non-liquid foods?
 

BethU

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Yes, I can still eat almost anything except salad, but it's very slow, and I have no appetite, so only eat small meals. I have toast and coffee for breakfast, and toast or pie (love this diet!) at bedtime, and usually some kind of "real food" at dinner, like half a small burrito, plus milkshake. I concentrate on taking in the most calories and protein with the least effort.

Swallowing solids and thin liquids is easier than thick liquids .... I don't have the delayed swallowing with solids. What I CAN'T do easily are mixed liquids and solid, like cereal and milk ... or pills and liquid.
 
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