Search
Search
About
Log in
Join
Experiences with
Amyotrophic lateral sclerosis (ALS)
Posts
Communities
892 public posts
Filter results
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Pennsylvania man battling ALS receives 'promising' new treatment at Philly hospital - Qalsody, formerly known as Tofersen
(
ALS
).
(
ALS
).
Bolt_Upright
in
Cure Parkinson's
1 year ago
Perplexed over lab work
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
aybaylay
in
Pernicious Anaemia Society
3 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Has anyone been using TUDCA or Restore Gold? Have you seen slowing or halting of progression of symptoms?
It looks like TUDCA is one of two ingredients in a drug now being sold to treat
ALS
, under the brand name Relyvrio in the U.S. (but at an extortionate list price of $158,000 a year) and ALBRIOZA in Canada. Co-formulated sodium phenylbutyrate/taurursodiol (PB/TURSO).
It looks like TUDCA is one of two ingredients in a drug now being sold to treat
ALS
, under the brand name Relyvrio in the U.S. (but at an extortionate list price of $158,000 a year) and ALBRIOZA in Canada. Co-formulated sodium phenylbutyrate/taurursodiol (PB/TURSO).
kathy775
in
Cure Parkinson's
11 months ago
so a different shoe dropped
A few years later his older brother was diagnosed with
ALS
. Shortly thereafter neurological problems started for him- falling down flights of stairs head first backwards was the worst. Extreme pain and other problems. Since his brother was slowly dying from the
ALS
, we had him tested for
ALS
.
A few years later his older brother was diagnosed with
ALS
. Shortly thereafter neurological problems started for him- falling down flights of stairs head first backwards was the worst. Extreme pain and other problems. Since his brother was slowly dying from the
ALS
, we had him tested for
ALS
.
MouseAddams
in
Advanced Prostate Cancer
9 months ago
Good report
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
DonnaBoll
Administrator
in
PBC Foundation
4 months ago
October is Domestic Violence Awareness Month
The common denominator for people who recovered from
ALS
is healing emotional trauma - it's an under recognized source of neuroinflammation. This is also true for Parkinson's disease.
The common denominator for people who recovered from
ALS
is healing emotional trauma - it's an under recognized source of neuroinflammation. This is also true for Parkinson's disease.
SilentEchoes
in
Cure Parkinson's
9 months ago
Curious about PBC symptoms and LFTs at Diagnosis
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Toddyboo
in
PBCers Organization
5 months ago
New Diagnosis of PBC and Prescribed URSO
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Toddyboo
in
PBC Foundation
5 months ago
New research suggests a therapeutic strategy for the replacement of aged and diseased human glial cells (astrocytes and oligodendrocytes).
The article title just mentions Huntington's disease, but the article itself also mentions
ALS
and schizophrenia, and the research paper also mentions Parkinson's disease and bipolar disease.
The article title just mentions Huntington's disease, but the article itself also mentions
ALS
and schizophrenia, and the research paper also mentions Parkinson's disease and bipolar disease.
jeffreyn
in
Cure Parkinson's
1 year ago
Pluvicto still working well
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Miccoman
in
Advanced Prostate Cancer
5 months ago
Dienogest
Let’s just say my last surgery without prostap I had a cyst the size of a VERY LARGE MELON around all my organs and I was in surgery 8 hours to remove it and the endo had grown through my bowel walls
als
, I was very sick for a long time.
Let’s just say my last surgery without prostap I had a cyst the size of a VERY LARGE MELON around all my organs and I was in surgery 8 hours to remove it and the endo had grown through my bowel walls
als
, I was very sick for a long time.
Ljmajor86
in
Endometriosis UK
1 month ago
My 10 year Anniversary is coming up on 7/16/2014. I'm not doing well.
I outlived my
ALS
prognosis of 3-5 years. My
ALS
progression has been slow - but poisons aren't selective and my kidneys have been damaged. I've been hospitalized at least 13 times in the last year and I have lost the function of my right kidney - it will be removed in June.
I outlived my
ALS
prognosis of 3-5 years. My
ALS
progression has been slow - but poisons aren't selective and my kidneys have been damaged. I've been hospitalized at least 13 times in the last year and I have lost the function of my right kidney - it will be removed in June.
SilentEchoes
in
Cure Parkinson's
4 months ago
COVID survivors may be at a greater risk of developing Parkinson’s–like symptoms, researchers warn. What to know to protect your health
[u]
However grim the findings, the team’s study resulted in some positive news:
drug riluzole, diabetes drug metformin, and cancer drug imatinib appear to prevent the aforementioned type of neurons from becoming infected with COVID and, thus, losing their ability to function properly[/u]."
[u]
However grim the findings, the team’s study resulted in some positive news:
drug riluzole, diabetes drug metformin, and cancer drug imatinib appear to prevent the aforementioned type of neurons from becoming infected with COVID and, thus, losing their ability to function properly[/u]."
Bolt_Upright
in
Cure Parkinson's
6 months ago
Someone finally said the quiet part out loud.
As if
ALS
wasn't bad enough, I'm in kidney failure and a cancer dx is imminent. I'm being forced to run the same gauntlet as my neurological injury. Doctors refuse to test and if they do, they deny their findings.
As if
ALS
wasn't bad enough, I'm in kidney failure and a cancer dx is imminent. I'm being forced to run the same gauntlet as my neurological injury. Doctors refuse to test and if they do, they deny their findings.
SilentEchoes
in
Cure Parkinson's
7 months ago
Alk phos on Xeloda
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Flower1513
in
SHARE Metastatic Breast Cancer
7 months ago
Effects of coenzyme Q10 in early Parkinson disease: evidence of slowing of the functional decline
“Mitochondria and the Future of Medicine” a chapter on mitochondrial involvement in neurodegeneration provides evidence that statins may be causal in many serious diseases such as
ALS
/MND, Parkinson’s Disease, Alzheimer’s disease, MS, etc.
“Mitochondria and the Future of Medicine” a chapter on mitochondrial involvement in neurodegeneration provides evidence that statins may be causal in many serious diseases such as
ALS
/MND, Parkinson’s Disease, Alzheimer’s disease, MS, etc.
SilentEchoes
in
Cure Parkinson's
10 months ago
update
hello everyone hope you’re all keeping as well as possible, I’ve had a blood test on the 22/ feb with nhs no thyroid’s done They were done as medichecks test for cpr was very high I would like to add a little more t3 as it’s not very high at the moment and feel as I need a good. Boost , to get
hello everyone hope you’re all keeping as well as possible, I’ve had a blood test on the 22/ feb with nhs no thyroid’s done They were done as medichecks test for cpr was very high I would like to add a little more t3 as it’s not very high at the moment and feel as I need a good. Boost , to get
Kowbie
in
Thyroid UK
5 months ago
Parkinson's disease drug ropinirole safely slows the progression of amyotrophic lateral sclerosis
The day will come when
ALS
is managed as a chronic illness and not a fatal one. But first the government needs to come clean about causation. Please take the time to watch this video with Dr.
The day will come when
ALS
is managed as a chronic illness and not a fatal one. But first the government needs to come clean about causation. Please take the time to watch this video with Dr.
SilentEchoes
in
Cure Parkinson's
1 year ago
sueky
Does this sound like a DILI? History of erythromycin use sine Christmas 2022 to control rosacea but altho a GP herself my daughter didnt follow the rules and stopped and started, also increasing and decreasing dose acc to how bad her rosacea was. On June 30th 2023 half an hour after going to bed absolutely
Does this sound like a DILI? History of erythromycin use sine Christmas 2022 to control rosacea but altho a GP herself my daughter didnt follow the rules and stopped and started, also increasing and decreasing dose acc to how bad her rosacea was. On June 30th 2023 half an hour after going to bed absolutely
suekaty
in
British Liver Trust
8 months ago
1
2
3
...
45
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
Thyroid UK
173 results
Cure Parkinson's
116 results
Advanced Prostate Cancer
103 results
View top 10 communities
Sort by
Most Relevant
Newest