Hi.My first.

[senior60]

Although i have not been diagnosed yet i was recently referred to an als clinic.
I have recently had a examination with neurologist (3 hours)emg and other tests.
My symptoms started about a year ago and has spread through both arms.
My next appointment may be months away and i have no medication except for pain from my gp.
I have a couple of questions.
For the progression how important is diet and is their vitamins i should be taking.
Can you point me in the right direction?Thanks

 

[Phil M]

Just do not loose weight. And try to stay positive!

 

[abbas child]

Hello, and welcome to the forum. I'm so sorry that you're having this need, however (no one wants to need to be here, smile). I agree with PhilM, in regard to MND. There is no recognized supplement which slows the disease. On the other hand, you may want to begin, if you haven't already, taking Calcium Citrate, Vitamin D and Magnesium Citrate for your bone density. There is a greater likelihood of falling if you have ALS, and breaking a bone isn't nice at all. Also, if you end up in a chair unable to walk (my own situation), you aren't doing any weight bearing exercise, again making the bones less dense, and more likely to break in an accident. Whether you're male or female, makes no difference regarding the bone density--men do have density loss also.

Hope that helps some. We'd all love to have something to actually do to help slow or stop progression, so your question is one we pretty much all ask. Wishing you the best,
Ann

 

[Lavender Lady]

Also, COQ10 is one that I take and many others with ALS. I get a liquid from Costco, but it comes in pill form as well. Best of wishes to you and sorry you are going through this. We are here for you.

 

[SueG]

Hi - Sorry for your situation - hang in there. In addition to the above good ideas, I am loading up on antioxidants - some from fruits and vegs, but also Vit E, r-lipoic acid, and the OPC antioxidant formula from Isotonix. And omega-3s, from fish or supplements or other sources. There's some thought that "good" fats are neuroprotective, and part of not losing weight can be making sure you have plenty of those (the only good part of this disease so far for me.. no, that's not true, all the support I've received both electronically and in person has also been uplifting). If you don't have cholesterol worries, go for the butter and ice cream!
As Ann noted, none of these vitamins or supplements has been proven to slow down the disease, but some of them may have good effects, and folks generally come up with a version that works for them.
Best of luck, and though nobody wants to be here, we are all here for each other.
Sue

 

[senior60]

Thank you all very much.

 

[Al]

Vitamin C, Vitamin E, CoEnzyme Q10 and creatine monohydrate are what I've used. Hasn't killed me yet. Oh, and at least 1 glass of red wine a day if you indulge.

AL.

 

[Marjorie R. Wilcox]

No white flour, pasta, rice, sugar, salt or artificial sweeteners. Eat many vegs, high protein, fruit, whole grain flour, eggs, and dairy (butter and cheese too) Substitute watercrest and stirfry vegs for pasta.
No instant or canned foods because of salt content. No cereals except oatmeal. No salt- no sugar- peanut butter and nuts of all kinds. One or two servings of potatoes each day for the need of B6 and B12.
Rick takes no meds at age 63, is a diabetic, and has an A1C of 5 with no pills or insulin after 6 years of this diet. It has eliminated the need for blood pressure meds. His cholesterol count is 100. He doesn't take any vitamins, just eats well. His blood count is great. Most important of all, he has slow progression of ALS so far. Doctors have asked us to publish this diet.

 

[HelenL]

Hi Marjorie, could you post and/or send me more details of your husband's diet? I'm not sure why no peanut butter and nuts for instance, I've been eating more of them thinking they'd be helpful. I'm trying to figure out how much creatine I should be taking daily, along with the Vitamin E, Co-Q-10, etc.
I also have been diagnosed with a slow progression ALS – not that I want to believe that to begin with – I need to buckle down and start doing more to delay this even more.
Thanks,
Helen