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Vanishing White Matter (VWM) disease
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autoimmune left or right bias?
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Stills
in
PMRGCAuk
2 months ago
Prostate cancer made to my brain, skull and muscles in my head
Well, that’s something isn’t it? Have you ever seen that much cancer in someone’s head? Both my radiation oncologist and my and my regular oncologist at City of Hope said that this is something very unusual for prostate cancer to do. So there getting all of it for research to investigate what the
Well, that’s something isn’t it? Have you ever seen that much cancer in someone’s head? Both my radiation oncologist and my and my regular oncologist at City of Hope said that this is something very unusual for prostate cancer to do. So there getting all of it for research to investigate what the
Gl448
in
Advanced Prostate Cancer
6 months ago
New Mets, PSA 0.4
Hi everyone, I’m so worry for my dad, he has been dealing with this disease since 2019, he was put on vacation 2 years ago and for the last 2 years off medication his PSA was around 0.01, life was good and we were happy for him until his last two psa tests which jumped to 0.4 ! He had a scan and one
Hi everyone, I’m so worry for my dad, he has been dealing with this disease since 2019, he was put on vacation 2 years ago and for the last 2 years off medication his PSA was around 0.01, life was good and we were happy for him until his last two psa tests which jumped to 0.4 ! He had a scan and one
godhelpus
in
Advanced Prostate Cancer
6 months ago
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My big discovery. Sjogren’s UCTD Fibro…
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
IsleofWight1
in
LUPUS UK
2 months ago
Rising PSA
What are the most Accurate scans for detecting hot spots of cancer? Husband has had several PSMA scans and CT with contrast yet nothing shows up. He had one lymph show up in 2017 on an Auxium scan and it was radiated. 7 years later PSA rising… up to 14. Yet scans show nothing definitive. CT with
What are the most Accurate scans for detecting hot spots of cancer? Husband has had several PSMA scans and CT with contrast yet nothing shows up. He had one lymph show up in 2017 on an Auxium scan and it was radiated. 7 years later PSA rising… up to 14. Yet scans show nothing definitive. CT with
JolleySprings
in
Advanced Prostate Cancer
6 months ago
Next step
x Summer of 2020.59 yr old. Spent 2021 on AS eventually psa went from 6.5 to 10 day of RALP. 2/14/22 GL 7a T3aN0M0 post psa at 3 months .04. Stayed until at one year .08 . At 18 months .1 now 2 years out .22 I had a neg psma scan but psa is low so false neg is very real. I have continually asked
x Summer of 2020.59 yr old. Spent 2021 on AS eventually psa went from 6.5 to 10 day of RALP. 2/14/22 GL 7a T3aN0M0 post psa at 3 months .04. Stayed until at one year .08 . At 18 months .1 now 2 years out .22 I had a neg psma scan but psa is low so false neg is very real. I have continually asked
Elbers123
in
Advanced Prostate Cancer
6 months ago
MCTD diagnosis, finally!
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
MauveMouse
in
Thyroid UK
2 months ago
JUNE NEWSLETTER
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
PAScomms
in
Pernicious Anaemia Society
2 months ago
PSA uptick
Quick background, my dad was diagnosed with metastatic PCa in 2018. Initially treated with docetaxel + ADT. His PSA has been at/near undetected (<0.01-0.02) for several years, but recently there has been an uptick to 0.08 (similar on a recheck, so not lab error). Obviously still low-level, but concerning
Quick background, my dad was diagnosed with metastatic PCa in 2018. Initially treated with docetaxel + ADT. His PSA has been at/near undetected (<0.01-0.02) for several years, but recently there has been an uptick to 0.08 (similar on a recheck, so not lab error). Obviously still low-level, but concerning
mediocra
in
Advanced Prostate Cancer
6 months ago
Intermittent fasting
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Swizzly
in
PMRGCAuk
3 months ago
Kpa results from scan
i had a fibro scan today , first one , was admitted to hospital beginning of january , with a bleed due to bacterial stomach infection when they discovered liver damage , ultrasound showed ? cirrhosis i’ve been out of hospital 5 weeks . and current ly have no symptoms my fibro scan was 17.5
i had a fibro scan today , first one , was admitted to hospital beginning of january , with a bleed due to bacterial stomach infection when they discovered liver damage , ultrasound showed ? cirrhosis i’ve been out of hospital 5 weeks . and current ly have no symptoms my fibro scan was 17.5
greensforliver
in
British Liver Trust
6 months ago
At what psa is PCa suspected?
my 45 year old son has a psa of 0.79. No PCa diagnosis. Should he be concerned? (Dad with PCa)
my 45 year old son has a psa of 0.79. No PCa diagnosis. Should he be concerned? (Dad with PCa)
CousinGrandpa
in
Advanced Prostate Cancer
6 months ago
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome?
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Shewulf
Administrator
in
LDN Research Trust
3 months ago
lupus or fibromyalgia
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
Pricey110
in
Fibromyalgia Action UK
3 months ago
fibromyalgia or lupus
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
Pricey110
in
LUPUS UK
3 months ago
Does fear play a role with pernicious anemia?
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
25092
in
Pernicious Anaemia Society
3 months ago
Radiation PSA, Orgovyx, Bone density Update 2/18/24
Rouge clone radiation on 10/31/23 has PSA from 4.83 on 11/20/23 to 0.85 on 12/18. HOWEVER, PSA up to 1.48 on 1/29/24 then 2.48 on 2/15/24. Waiting MO response but anticipate PET scan, radiation and/or switch to Xtandi. Was hoping to ride the Zytiga therapy as long as possible but I may be there now.
Rouge clone radiation on 10/31/23 has PSA from 4.83 on 11/20/23 to 0.85 on 12/18. HOWEVER, PSA up to 1.48 on 1/29/24 then 2.48 on 2/15/24. Waiting MO response but anticipate PET scan, radiation and/or switch to Xtandi. Was hoping to ride the Zytiga therapy as long as possible but I may be there now.
alperk
in
Advanced Prostate Cancer
6 months ago
Suboptimal Cortisol levels following Synacthen test
I’ve just turned 60 and used to be a sportsperson. I’ve been on predisolene for 5 1/2 years and unable to get below 5mg despite several slow attempts. My rheumy suggested a short synacthen test via Endo which was 8 months later. I barely function on 5mg with doing bare minimum, giving up my small flower
I’ve just turned 60 and used to be a sportsperson. I’ve been on predisolene for 5 1/2 years and unable to get below 5mg despite several slow attempts. My rheumy suggested a short synacthen test via Endo which was 8 months later. I barely function on 5mg with doing bare minimum, giving up my small flower
Heucera1
in
PMRGCAuk
6 months ago
Pred dose post hip operation
Hi, and thank you in advance to all who have the patience to read this long story, and the kindness to offer advice: I have so many things going on at the moment! Currently, PMR seems like the least of my problems, and I’m hoping I can ride the other medical turmoil I’m in without it raising it’s head
Hi, and thank you in advance to all who have the patience to read this long story, and the kindness to offer advice: I have so many things going on at the moment! Currently, PMR seems like the least of my problems, and I’m hoping I can ride the other medical turmoil I’m in without it raising it’s head
calibriel
in
PMRGCAuk
6 months ago
Father’s CRPCa Failed chemo (Cabazitaxel,Docetaxel) and Failed LU177
Father’s current Age: 78 At age 70, Diagnosed with Pca in 2015 after seeing initial PSA as ~ 270. 2015 - 2019 - BICALUTAMIDE - Failed 2019 - 2020 - Radiation- Ineffective 2020 Oct - 2021 October - Zytiga (Aberiterone) - Failed - PSA 98 2021 Dec - 2022 Apr - Docetaxel- Ineffective - PSA 120 2022
Father’s current Age: 78 At age 70, Diagnosed with Pca in 2015 after seeing initial PSA as ~ 270. 2015 - 2019 - BICALUTAMIDE - Failed 2019 - 2020 - Radiation- Ineffective 2020 Oct - 2021 October - Zytiga (Aberiterone) - Failed - PSA 98 2021 Dec - 2022 Apr - Docetaxel- Ineffective - PSA 120 2022
Vishwa1890
in
Advanced Prostate Cancer
6 months ago
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