Old 07-07-2018, 03:07 AM #1 (permalink)
TIANDB's Avatar
New Member
 
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
TIANDB TIANDB is online now
New Member
TIANDB's Avatar
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
Wink Hi all. TIANDB

Hi i was pointed here by Nikkij . The Introduction link should be top of the page IMHO.

I left the Fire service here in the UK aged 50 in 2012 I had enough in my pension pot to get by on and I had a sweating problem, I thought this might be due to job stresses and would clear up when I departed.. It did not but it will..
Fast forward to today and I can just about wobble around and my voice is not working correctly, I am mostly stuck wobbling still, indoors.
My father with whom I had a on off relationship as he was sometimes to drunk and sometimes violent. He died at aged 59 after being diagnosed with ALS. two years earlier.. I had my ALS confirmed earlier this month June 2018. What a palaver it was to get my diagnosis quickly, two months from first contacting my Doctor. I had noticed leg muscle twitches in June of 2017 but put that down to my exercise, I used to walk, Swim and Cycle .. No true signs until November with my right foot slowing then tick tock down with not a day's respite, my right leg heavy and slurring by January 2018. No up day.
My Doctor who I first contacted in April 2018 got me a neurology appointment through for September and he could not seem with some pushing to get a sooner one. With the help of my xwife and other Angels I managed to get all the appointments and testings and diagnosis done on the NHS within two months. I have applied for Special PIP payment and sent of my DS1500 from my Doctor. Awaiting news ?
My first idea was to Liquid fast some hoping to improve my Autophagy.
https://scholar.google.co.uk/scholar...=1&oi=scholart
This was started 9 days ago for 44 Days with modification so it was 3 day liquid fast ( Nettle T, green T, Bio Yoghurt, good water. And the forth Day Eating well.
I have modified again and it will be Intermittent Fasting with high protein within a 4 Hour window and my liquids on 3 days and eat well high fat/Protein on the fourth.
I am also looking into RCH4 and find the thought of 2 radical and destructive proteins as of interest.
I am pleased to be here but not with my Diagnosis. I wish you all for some miracles.. PEACE : TIANDB
TIANDB is online now  
Old 07-07-2018, 05:53 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Hi all. TIANDB

Thanks for posting. We look forward to getting to know you.

This is not near the top because we need to limit the need to scroll for PALS using alternative technology.

In our visitor page conversation you said you were awaiting genetic testing results. You may know that there is a current trial for SOD1 ALS gene blocking. Rumor has it that it is going well. It has expanded several times and has an open label extension.

C9 is scheduled to start trials in September with a different version this winter. These are the 2 most common forms of FALS.

The same technology has shown remarkable results for sma1 - not a complete cure but allowing the kids to survive and develop.

When you said genome test you did mean testing for ALS genes right? C9 does not show on standard genome sequencing and statistically is your most likely cause. Your age and likely ethnicity also make it likely

Sorry you had to find your way here
Nikki J is offline  
Old 07-07-2018, 06:14 AM #3 (permalink)
TIANDB's Avatar
New Member
 
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
TIANDB TIANDB is online now
New Member
TIANDB's Avatar
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
Default Re: Hi all. TIANDB

Hi again Nikkij.. It was blood test relating to ALS genes.. So I will be interested in any gene news updates. Understood about the Intro placing .

Thanks : TIANDB
TIANDB is online now  
Old 07-07-2018, 07:40 AM #4 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Hi all. TIANDB

Let me know what your results show!

Search for antisense therapy, biogen, gene silencing. Antisense is being used for SMA as I said. It is in hopeful looking trials for HD and SOD1

My neurologist has consistently said it represents the best hope for my family. In fact she says don’t worry about the kids and is optimistic for my currently asymptomatic cousins who are all older now than our youngest onset age

It makes sense to me that if our ALS is caused by a mutant gene blocking the function that causes the damage should be the answer
Nikki J is offline  
Thanks from
Ash12345 (07-07-2018)
Old 07-07-2018, 07:49 AM #5 (permalink)
beauty4everyone's Avatar
New Member
 
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 69
beauty4everyone is a jewel in the roughbeauty4everyone is a jewel in the roughbeauty4everyone is a jewel in the rough
beauty4everyone beauty4everyone is offline
New Member
beauty4everyone's Avatar
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 69
beauty4everyone is a jewel in the roughbeauty4everyone is a jewel in the roughbeauty4everyone is a jewel in the rough
Default Re: Hi all. TIANDB

USA Saturday, July 07, 2018 8:40am
Dear TIANDB, Salutations from the USA. I'm sorry you need to be here, but "take heart", we're all in this together.
While I'm not exactly "wobbly", I have a propensity to fall over without warning. Still have a back-of-head lump from Father's Day restaurant crash. Live and learn not to let go of my Rollator. When first joining, mentioned some things I've found helpful. Perhaps for you, too.
In spite of circumstances, may you find something beautiful in this day. May blessings abound.
beauty4everyone is offline  
Thanks from
TIANDB (07-26-2018)
Old 07-07-2018, 09:13 AM #6 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,006
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,006
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Hi all. TIANDB

Welcome TIANDB. With your dietary modifications, just make sure you donít lose weight. Weight loss speeds disease progression by accelerating muscle loss.
KarenNWendyn is offline  
Thanks from
TIANDB (07-26-2018)
Old 07-07-2018, 10:01 AM #7 (permalink)
TIANDB's Avatar
New Member
 
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
TIANDB TIANDB is online now
New Member
TIANDB's Avatar
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
Default Re: Hi all. TIANDB

Hi Nikkij I will post when I get my results and look into your suggestions. Although my look into most gene work with ALS has shown
a lot of false hope an big bucks. My genes have worked perfectly for 55 Years if one was turned off that might effect my life in a different way ? I am looking at defunct proteins after age related toxicity then the immune system plays its part and attacks and kills the damaged cells. If If the RCH4 crew know two of these proteins ? We may discover one day and hopefully soon.
My AlS started in my R foot which was a weak point in my body and a good distance from my spine or brain this may have relevance also ?
Hi beauty4everyone I will chase up your postings and pick out any useful tips.. Take care.
Hi KarenNWendyn, Yep that is why I changed from planned I am +20lbs over since onset due to my Lazy life ha.
Take care all..

Last edited by TIANDB : 07-07-2018 at 11:18 AM Reason: ADD
TIANDB is online now  
Old 07-10-2018, 07:09 PM #8 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Hi all. TIANDB

Posts were moved from this thread to the FALS forum in a new thread so that I won’t total hijack this thread!
Nikki J is offline  
Thanks from
TIANDB (07-26-2018)
Old 07-31-2018, 05:34 PM #9 (permalink)
TIANDB's Avatar
New Member
 
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
TIANDB TIANDB is online now
New Member
TIANDB's Avatar
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
Default Re: Hi all. TIANDB

Well I had an Consultants visit today the first time I have ventured out since Diagnosed In June. Ambulance pick up and drop off with the usual waiting around.
So C9 orF72 is my faulty gene.. I will pay particular interest in the Testing due to start later in the year maybe ?
TIANDB is online now  
Old 07-31-2018, 05:44 PM #10 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,432
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Hi all. TIANDB

September for Biogen I was told one month ago by someone who is probably going to be a site investigator

Another form this winter if all goes on schedule.

Suggest adding TUDCA if you have not already. It is postulated in a lab study of ER stress in C9 that it might be beneficial. Of course many PALS who are not c9 take it too
Nikki J is offline  
Old 07-31-2018, 06:32 PM #11 (permalink)
TIANDB's Avatar
New Member
 
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
TIANDB TIANDB is online now
New Member
TIANDB's Avatar
Join Date: 2018
City: Matlock
State: Derbyshire
Country: Uni
Diagnosed: 06/2018
Interest: I have been diagnosed with ALS.
Posts: 18
TIANDB is on a distinguished road
Default Re: Hi all. TIANDB

Hi Nikki J.
I will look into TUDCA, ( Expensive ) Not noticed any mention of it before.
I have a long list of supplements sitting in my cupboard I tend to do in 4's a few times a day.
Today for instance.. 8am Vitamin E Complex, Vitamin B Complex, Zinc Gluconate 50mg, Tumeric Curcumin Complex 800mg.
12am.. Alpha lipoic acid , Mognolia Bark, Gotu Kola, Nicotinamide 500mg.
TIANDB is online now  
Closed Thread

Tags
als, diagnosed, diagnosis, exercise, father, foot, introduction, muscle, muscle twitches, neurology, problem, respite, twitches, voice


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 06:20 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016