27 and just diagnosed with ALS

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I'm not sure if it will help you or not. There has not been scientific study but last week I started my mom on an unproven protocol. If you search the web you can find an e-mail and they will reply with information. Again I'm not sure if it works or not. It's likely a long shot but .....

Steve
 
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I started the protocol this week with a ton of skepticisim. Greg, I am 44 with two young boys so I know right where you are. It is killing me(bad choice of words?) that I can't be there for my wife and boys for the long haul. The DP is not the only thing I am doing. I am also trying to eliminate toxins from my body in any way I can. I spoke to a Dr affiliated with Duke U and ALSuntangled and they are reviewing the DP with 3 patients. They did say the all the supplements on the DP had been used in other protocols without success but they had never been used all together like the DP. He did say he was unable to verify she even had ALS. Anthony Topazi just vouched for the DP and stated it is working for him. They are giving the info out for free so I don't thnk it is a sc am. The supplements are fairly inexpensive so I am giving it a shot. It might get expensive if you have to take them the rest of your life but it beats the alternative.
 
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Hi Greg...first off, so sorry to hear about your diagnosis, I truly wish you and your family the best...hopefully it's a misdiagnosis!

I was wondering if you noticed any issues from your breathing based on your slightly low pulmonary tests? Thanks
 
i am going to give DP a shot jpsteeler keep me posted on how its effecting you (hope ur not a steelers fan:) hamdog i have not really noticed an issue with my breathing except maybe a little bit when i lay down at night. but other than that it feels pretty normal
 
My ALS started with arm/leg twitching and Charles horse spasms in legs probably a few years before arm weakness. Everyone is different. Unfortunately, I think ALS affects more young people than was previously thought, maybe registry will tell us more.
 
Our ALS specialist in Toronto indicated that Riluetek is the only medication that has been clinically proven to slow the progression of the disease. He explained that, in my husband's case, this could mean another 2 or 3 months of eating, swallowing and, I might add, being able to operate his power wheelchair. My husband's ALS had begun to progress quite rapidly by the time we started it and there is no way of measuring whether or not it had the intended result at $800.00 month but were able to get out for "walks" all summer long and my husband continues to eat, albeit a completely pureed diet. My private insurance paid so the decision was easy and I will always be thankful for being able to enjoy the summer. whatever the cause. I'm so sorry that you and you wife are dealing with this with a young family but hope that they give you strength and joy.
 
Even being a new one, I am sorry too( Greg) for your young wife like you.
 
Hi Greg. I was diagnosed on 11/14/12 @ 2:30pm. I think the day and time we were all told is etched in our brains. My niece was 4 when I started showing signs. She is with me every day still. My major concern was for her not be afraid of me and what I am dealing with. What I did with her is joke about it. I was falling a lot and when she would fall I would say "oh you pulled an auntie!" and start laughing. Now she comes to me and says "I did a funny auntie yesterday and I laugh and if I fall and she's not around I still share. She knows auntie is sick with her muscles. I still play with her and her ten friends outside. I just sit in a wheelchair and they love to play red light green light or mother may I. I'm still playing and spending every second I can playing with her. We play a game now, how many pushes before auntie falls on the couch lol. Don't give up! I am on Rilutek and have had no side effects. I'm also going to be a ginny pig for some new meds. I wake up every morning and say f$&@k you ALS, NOT TODAY. You have it like all of us but don't let it have you. I'm here as well as everyone else. Good luck.
 
susan702: May I ask you, could you elaborate a bit on your twitching before weakness? This is very common source of fear for us who have twitching and nothing else and neuros told us that without weakness, we have no ALS.
Was your twitching constant, sporadic, exercise induced..just in arms, legs? Thank you in advance
 
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