Recent ALS diagnosis - bulbar issues only so far, ways I've been fighting it and questions:

PrimaVera

New member
Joined
Apr 23, 2020
Messages
7
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Hi Sandy, the path you are on sound exactly like me a year ago. Check out EverythingALS and HealingALS for other things to consider.
 

Sandy14

Member
Forum Supporter
Joined
Dec 20, 2020
Messages
19
Reason
PALS
Diagnosis
07/2020
Country
US
State
NY
City
Westchester
Hi PrimaVera - thank you so much for sharing those websites with me - I'm particularly intrigued by the HealingALS site. Where are you these days in terms of ALS progression? Have any of these "outside-the-box" approaches notably helped you? Funny you're in Shelton, I just had someone mention to me yesterday he was in Shelton too (though I can't recall who). FYI, I started the NAD+ IV drips yesterday and have another one scheduled for later today up in Stamford. Definitely not a pleasant experience, though I did feel much better today than yesterday and even noticed a slight improvement in my speech. Still have 3-5 more doses to go through so I'll gladly keep you updated if you're at all interested?
 

SusieN

New member
Joined
Dec 7, 2020
Messages
2
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
MI
City
Traverse City
Sandy, my sister used sativa tincture through her feeding tube to help with the saliva, and it did. She used indica tincture to help her sleep, which it did.

I would love to get a link to the studies about NADS+ that you mentioned. I have the c9orf72 gene mutations that say I'm going to come down with ALS eventually. I have been taking Elysium Basis (NADS+) for 6-7 years now (claims to slow brain aging), and recently started with their Elysium Matter that is supposed to slow brain shrinkage with age.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,869
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Susie
are you in any of the longitudinal genetic studies? We are very close to presymptomatic treatments. Sod1 will start its first presymptomatic trial this year. C9 isn’t there yet. We need both a treatment that has been shown to help symptomatic C9 ALS and biomarkers that are reliable predictors for c9 onset. To get the latter we need more asymptomatic carriers to participate
 

Pipis

Member
Joined
Nov 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
GR
State
GR
City
Corfu
Hi and welcome...I really hope your problem turns to be something else than als....I also had tingling in my feet and burning sensations firstly without fasciculations...after 2 months I noticed my calves twitching and my first weakness came 3 months after onset in both my ankles...from that moment it was really quick in my case till I was wheelchair bound ,6 months after and I could only did some steps without help...my hand fingers also weak pretty fast ,I had only hoarse voice at first but then came back normal..my 2 first emgs showed widespread denervation in both legs and arms...no bulbar muscles...my third emg showed denervation in arms ,legs ,bulbar and tongue...I don't know what helped me, my story is rather unusual because in September 2020 after all that decline I started to reverse from whatever I have ,I still feel weak but my strength especially in legs is 60% back and I can walk again long distances...I have pain in my feet though after walking and fasciculations still present in almost every muscle...my hands are 50% back...right now I am willing to travel again in university of patras in Greece for re evaluation but due to covid restrictions I am waiting. I consumed turmeric with ground pepper from onset and recently I added coq10 and lipoleic acid...I'm doing a lot of stretching and yoga...I also love sunlight and it really helped ....I used to sit in my back yard in the wheelchair and had my barefoot in the ground, maybe it was coincidence but that was the timing when I started to feel better.. my breathing was the first thing I noticed getting better along with my minor swallowing problem..then legs and arms....I wish my reverse to continue as I m wishing all the best to you and everyone who read this...of course I'll keep this forum informed.
 

Sandy14

Member
Forum Supporter
Joined
Dec 20, 2020
Messages
19
Reason
PALS
Diagnosis
07/2020
Country
US
State
NY
City
Westchester
Hi Susie,

I am so sorry that I am just now seeing your response to my post. If you look back to page 1, I have already included the articles about NAD+. FWIW, I have had my full loading dose (4-6 consecutive days of an IV) and am going back tomorrow for my maintenance dose. I did start feeling much better after the full loading dose; however, I experienced vertigo the day after I was done. Lately, I've been feeling a lot better, but there are so many supplements I've started plus Nuedexta. I would recommend you google Dr. Richard Bedlack and his YouTube video. It is very uplifting. He is a well-regarded neurologist at Duke who has also studied dozens of cases where PALS reversed their ALS. There's also a website called ALSuntangled that lists all kinds of supplements that many of these PALS had taken. If you'd like to discuss in greater detail, feel free to send me a direct message.

Best,

Sandy
 

Sandy14

Member
Forum Supporter
Joined
Dec 20, 2020
Messages
19
Reason
PALS
Diagnosis
07/2020
Country
US
State
NY
City
Westchester
Thanks Pipis. I am so excited to hear about your amazing progress! I too have been taking turmeric and do lots of stretching. I also take a wide range of other supplements, including vitamin c w/ lipoid acid and glutathione. One of the things that helps me more than anything else is meditating every day - there is one particular hypnosis meditation where you visualize your body healing and it helps me feel so much more positive. I too have noticed my swallowing and my ability to move food around in my mouth vastly improved lately. Also, I can spit out forcefully again!

Continued Good Luck!
 
Top