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Experiences with
Amyotrophic lateral sclerosis (ALS)
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Alkaline phos rising yet symptoms lessing?
My husband began Zolodex close to 2 weeks ago. He's a 13 year Stage IV survivor. His alk phos is increasing and yet after he did the initial Casodex, got the injection of Zolodex, his symptoms are lessening greatly. He has reduced pain meds, sometimes even to the point where an Advil and Tylenol will
My husband began Zolodex close to 2 weeks ago. He's a 13 year Stage IV survivor. His alk phos is increasing and yet after he did the initial Casodex, got the injection of Zolodex, his symptoms are lessening greatly. He has reduced pain meds, sometimes even to the point where an Advil and Tylenol will
Bluebird11
in
Advanced Prostate Cancer
4 years ago
Why do people infected with COVID-19 lose their sense of smell and taste?
For now, those with
ALS
and other condition that affect respiration should be counselled to stick to CDC recommendations for high-risk groups. Neurologists, be alert.
For now, those with
ALS
and other condition that affect respiration should be counselled to stick to CDC recommendations for high-risk groups. Neurologists, be alert.
SilentEchoes
in
Cure Parkinson's
4 years ago
Riluzole and Ataxia
Hi Ataxia Friends I recently saw my neurologist and he suggested trying Riluzole, a drug in trial for
ALS
- Lou Gehrig disease. I have SCA6. Has anyone tried this for ataxia? Thanks Tina
Hi Ataxia Friends I recently saw my neurologist and he suggested trying Riluzole, a drug in trial for
ALS
- Lou Gehrig disease. I have SCA6. Has anyone tried this for ataxia? Thanks Tina
Mneutz
in
Ataxia UK
4 years ago
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Medical Hero Spotlight: Sandy Morris, ALS Patient & Advocate
Sandy Morris, an #
ALS
patient & advocate, candidly shares her story in our latest Medical Hero Spotlight. Read more here: https://www.ciscrp.org/medical-hero-spotlight-sandy-morris-
als
-advocate/ Contact us to subscribe to our Quarterly Newsletter: https://www.ciscrp.org/about-us/contact-us/
Sandy Morris, an #
ALS
patient & advocate, candidly shares her story in our latest Medical Hero Spotlight. Read more here: https://www.ciscrp.org/medical-hero-spotlight-sandy-morris-
als
-advocate/ Contact us to subscribe to our Quarterly Newsletter: https://www.ciscrp.org/about-us/contact-us/
ciscrp_official
Partner
in
Understanding Clinical Trials
4 years ago
Doubling Flare after 7 days of Casodex and 1 day of Zolodex
Questions: My husband diagnosed Stage IV 13 years ago. He's not been on Casodex or Zolodex since 2014. We hadn't taken a PSA for about 6 weeks. His psa went from 55 to 64 in that time. It was the alk phos that scared us, it shot up to 740, I honestly can't remember the number.. it was at another blood
Questions: My husband diagnosed Stage IV 13 years ago. He's not been on Casodex or Zolodex since 2014. We hadn't taken a PSA for about 6 weeks. His psa went from 55 to 64 in that time. It was the alk phos that scared us, it shot up to 740, I honestly can't remember the number.. it was at another blood
Bluebird11
in
Advanced Prostate Cancer
4 years ago
A small rise in PSA What do you think of my plan
I'm a 76 1/3 yo that has spent 2 1/4 yrs on Zytiga had IMRT, SBRT to the bone and on Xgeva. Psa was <.1 for 8 mos and has risen to .2 Alk Phos looks good. I'm expecting PSA will not go down and plan to try again to get Dexamethasone prescribed in lieu of pred. Will provide my MO in advance of next visit
I'm a 76 1/3 yo that has spent 2 1/4 yrs on Zytiga had IMRT, SBRT to the bone and on Xgeva. Psa was <.1 for 8 mos and has risen to .2 Alk Phos looks good. I'm expecting PSA will not go down and plan to try again to get Dexamethasone prescribed in lieu of pred. Will provide my MO in advance of next visit
ctflatlander
in
Advanced Prostate Cancer
4 years ago
Still having fun
I have MS, he has
ALS
and is on hospice. Art is nonverbal and very weak. I was helping him after his shower yesterday and had him sitting on his rollator, facing me. I backed him out of the bathroom and took off, zooming him all through the house. His face!!!
I have MS, he has
ALS
and is on hospice. Art is nonverbal and very weak. I was helping him after his shower yesterday and had him sitting on his rollator, facing me. I backed him out of the bathroom and took off, zooming him all through the house. His face!!!
cindyrn68
in
My MSAA Community
4 years ago
Poor liver function, sudden explosive diarrhea - no diagnosis
Hi I'm new to all this and feeling pretty isolated and fed up. I've been off work since June '19. I've had poor liver function since Sept' 19. Serum gamma 106 Serum alk phos 333-362 Serum Alan amino 222-266 On top of this since Dec '19 I've had sudden explosive diarrhea, faecal calprotectin at 206.
Hi I'm new to all this and feeling pretty isolated and fed up. I've been off work since June '19. I've had poor liver function since Sept' 19. Serum gamma 106 Serum alk phos 333-362 Serum Alan amino 222-266 On top of this since Dec '19 I've had sudden explosive diarrhea, faecal calprotectin at 206.
Dmoose24
in
British Liver Trust
4 years ago
Health Anxiety ALS
How can I overcome my Health Anxiety I have a fear about getting
ALS
I have muscle twitching, and stiff legs and it always feels like something is in my throat I haven't been sleeping and have been stressed constantly, I keep overanalyzing everything checking for symptoms thinking about how I walk etc
How can I overcome my Health Anxiety I have a fear about getting
ALS
I have muscle twitching, and stiff legs and it always feels like something is in my throat I haven't been sleeping and have been stressed constantly, I keep overanalyzing everything checking for symptoms thinking about how I walk etc
Scottkom20
in
Anxiety Support
4 years ago
Alk Phos Flare?
Similar to how PSA can go up before it goes down as dying cancer cells release PSA in response to treatment, can the same phenomenon happen with Alk Phos in response to radiation to bone lesions? Thank you everyone.
Similar to how PSA can go up before it goes down as dying cancer cells release PSA in response to treatment, can the same phenomenon happen with Alk Phos in response to radiation to bone lesions? Thank you everyone.
Shanti1
in
Advanced Prostate Cancer
4 years ago
Medical Perspective on COVID-19 from Seattle
I am posting this from the consideration that information is empowering, and in this case is full of caution. It is from a physician deeply involved in the fight to care for Seattle COVID patients. It is not a controlled study and has no statistics. Rather a first-person perspective on how this is unfolding
I am posting this from the consideration that information is empowering, and in this case is full of caution. It is from a physician deeply involved in the fight to care for Seattle COVID patients. It is not a controlled study and has no statistics. Rather a first-person perspective on how this is unfolding
MateoBeach
in
Advanced Prostate Cancer
4 years ago
Health Related Anxiety about Als
The only thing I can think of is I watched The movie about Stephen Hawkings and it imprinted in my mind I became obsessed with looking up treatments and theries on the disease I read a 176 page paper one night on the alleged connection between Lyme Disease and
ALS
.
The only thing I can think of is I watched The movie about Stephen Hawkings and it imprinted in my mind I became obsessed with looking up treatments and theries on the disease I read a 176 page paper one night on the alleged connection between Lyme Disease and
ALS
.
Scottkom20
in
Anxiety and Depression Support
4 years ago
FND symptoms for 7 years
I started to think about the possibility that I have
ALS
, even though I’m almost certain I don’t have it, almost every doctor and neurologist I have seen has demystified that for me, but I can’t let that idea go. Does anyone else experience similar symptoms and or diagnosis[s]
I started to think about the possibility that I have
ALS
, even though I’m almost certain I don’t have it, almost every doctor and neurologist I have seen has demystified that for me, but I can’t let that idea go. Does anyone else experience similar symptoms and or diagnosis[s]
CallmeRouge
in
Functional Neurological Disorder - FND Hope
4 years ago
Brain Tumour Worry - Health anxiety?!
I've also had some muscle twitching which I've had before with MND/
ALS
fears. I've been (obviously) googling a lot, trying to get any answer that I'm ok.
I've also had some muscle twitching which I've had before with MND/
ALS
fears. I've been (obviously) googling a lot, trying to get any answer that I'm ok.
LDHarv
in
Anxiety Support
4 years ago
Status as promised - not PMR
After a new neurological examination including EMG (ei. not
ALS
) I am back with the reumatologists. Now referred to the national special hospital department for a.o. autoimmune inflammatory diseases.
After a new neurological examination including EMG (ei. not
ALS
) I am back with the reumatologists. Now referred to the national special hospital department for a.o. autoimmune inflammatory diseases.
krillemy
in
PMRGCAuk
4 years ago
Liver Function Abnormalities Rare in Men With Metastatic Prostate Cancer Treated With Abiraterone Acetate
Source: https://www.practiceupdate.com/content/liver-function-abnormalities-rare-in-men-with-metastatic-prostate-cancer-treated-with-abiraterone-acetate/97495/61/11/1 TAKE-HOME MESSAGE The authors report the management and outcomes of patients with elevated liver function test results secondary to
Source: https://www.practiceupdate.com/content/liver-function-abnormalities-rare-in-men-with-metastatic-prostate-cancer-treated-with-abiraterone-acetate/97495/61/11/1 TAKE-HOME MESSAGE The authors report the management and outcomes of patients with elevated liver function test results secondary to
TNCanuck
in
Advanced Prostate Cancer
4 years ago
Radium 223 Side Effects?
Hubby had his first radium treatment almost 2 weeks ago. For those of you that have had this treatment what side effects have you had? He had bloodwork done on Monday and he does not need a blood transfusion, but his liver functions are decreased, his alk phos went from 143 to 223. Onc ordered an urgent
Hubby had his first radium treatment almost 2 weeks ago. For those of you that have had this treatment what side effects have you had? He had bloodwork done on Monday and he does not need a blood transfusion, but his liver functions are decreased, his alk phos went from 143 to 223. Onc ordered an urgent
Luv2fish
in
Prostate Cancer Network
4 years ago
Eyes look slightly yellow( Photo attached)
im 25 and was diagnosed with grade 1 fatty liver 4 months ago. iv had upper right abdomen pain ever since. lft taken 2 months ago showed sgot 38 and sgpt 67. from the pas few days I have been noticing my eyes are yellow but I don't have fever. i have been driving since 7 years but never in excess and
im 25 and was diagnosed with grade 1 fatty liver 4 months ago. iv had upper right abdomen pain ever since. lft taken 2 months ago showed sgot 38 and sgpt 67. from the pas few days I have been noticing my eyes are yellow but I don't have fever. i have been driving since 7 years but never in excess and
Kaushik21
in
British Liver Trust
4 years ago
Zytiga and Liver Function
was wondering if anyone else ran into this. Some back ground. Diagnosed with cancer in Nov 2019. Gleason 9, PSA 250+ with bone mets(lots of them). Started on Lupron on 12/1, Zytiga 1/1. Blood tests good until this last one (yesterday). While PSA and alk phos of gotten better. PSA from 250 to 7
was wondering if anyone else ran into this. Some back ground. Diagnosed with cancer in Nov 2019. Gleason 9, PSA 250+ with bone mets(lots of them). Started on Lupron on 12/1, Zytiga 1/1. Blood tests good until this last one (yesterday). While PSA and alk phos of gotten better. PSA from 250 to 7
Newyork6264
in
Advanced Prostate Cancer
4 years ago
Annoyed with that groundhog
My husband has
ALS
and we've been on quite the roller coaster ride the past few months. Whew! On another topic, I am thoroughly put out with Punx. Phil. I haven't had winter yet and he's calling for an early spring.
My husband has
ALS
and we've been on quite the roller coaster ride the past few months. Whew! On another topic, I am thoroughly put out with Punx. Phil. I haven't had winter yet and he's calling for an early spring.
cindyrn68
in
My MSAA Community
4 years ago
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