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Asking for your stories and help
Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother was finally diagnosed. We are from Poland, where there is no other treatment apart from amantadine and levodopa. There are also no websites or support groups like yours. That's why I would like to ask if, apart from a physiotherapist
Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother was finally diagnosed. We are from Poland, where there is no other treatment apart from amantadine and levodopa. There are also no websites or support groups like yours. That's why I would like to ask if, apart from a physiotherapist
garucha
in
PSP Association
25 days ago
Blood results
I am wondering whether these latest results might shed some light on me waking very early in the mornings 0430 at the moment with night sweats and unable to get back to sleep and high blood pressure results at various times of the day. I am currently on 115mcg Levo and 10mcg of T3. I have an appointment
I am wondering whether these latest results might shed some light on me waking very early in the mornings 0430 at the moment with night sweats and unable to get back to sleep and high blood pressure results at various times of the day. I am currently on 115mcg Levo and 10mcg of T3. I have an appointment
Turquoisenona
in
Thyroid UK
26 days ago
after being fast tracked ABD-147 was designed orphan drug for the Treatment of Neuroendocrine Carcinoma (prostate included)
DLL3 is expressed by neuroendocrine cancers, including prostate cancer! They plan to start a phase 1 trial by the end of 2024 (on lung cancer, but it’s worth to keep an eye on it). “ABD-147 is a next-generation precision radiopharmaceutical biologic therapy designed to deliver Actinium-225 (225Ac)
DLL3 is expressed by neuroendocrine cancers, including prostate cancer! They plan to start a phase 1 trial by the end of 2024 (on lung cancer, but it’s worth to keep an eye on it). “ABD-147 is a next-generation precision radiopharmaceutical biologic therapy designed to deliver Actinium-225 (225Ac)
Maxone73
in
Advanced Prostate Cancer
27 days ago
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Will Biological Therapy drugs work for me?!
I just wanted to see if there was anyone out there similar to me and to see if anything worked. I'll try and briefly explain.... 4 years I've had it... Deep burning pain in my left bum cheek (si joint area) and throbbing burning all down my left side/leg. Basically sciatica. I can't sleep on my left
I just wanted to see if there was anyone out there similar to me and to see if anything worked. I'll try and briefly explain.... 4 years I've had it... Deep burning pain in my left bum cheek (si joint area) and throbbing burning all down my left side/leg. Basically sciatica. I can't sleep on my left
BusyMumOfBoys
in
Pain Concern
1 month ago
Stage 3 curative?
HiMy mum (76 years old with COPD and emphysema) was diagnosed on 17 June with stage 3 nsclc with localised spread to a rib and lymph node. She has her 20th and last radiotherapy dose tomorrow. The oncologist said he was aiming for curative. There has been no mention of chemo or targeted therapy. Is this
HiMy mum (76 years old with COPD and emphysema) was diagnosed on 17 June with stage 3 nsclc with localised spread to a rib and lymph node. She has her 20th and last radiotherapy dose tomorrow. The oncologist said he was aiming for curative. There has been no mention of chemo or targeted therapy. Is this
Lesleypod
in
The Roy Castle Lung Cancer Foundation
1 month ago
Celeste photopharmics trial
I would like to know if anyone in this group is participating in this clinical trial [u]DB RCT for Specialized Phototherapy in Parkinson's Disease. (LIGHT-PD[/u]) ClinicalTrials.gov ID NCT04453033 Sponsor PhotoPharmics, Inc. https://clinicaltrials.gov/study/NCT04453033?locStr=United%20States&country
I would like to know if anyone in this group is participating in this clinical trial [u]DB RCT for Specialized Phototherapy in Parkinson's Disease. (LIGHT-PD[/u]) ClinicalTrials.gov ID NCT04453033 Sponsor PhotoPharmics, Inc. https://clinicaltrials.gov/study/NCT04453033?locStr=United%20States&country
Boscoejean
in
Cure Parkinson's
1 month ago
ketamine treatment
Hi all. I suffer from severe anxiety and PTSD. I’m a 62 year old woman. I moved from pa to fl two years ago with my adopted daughter who is now 17 and a senior in high school. I divorced my husband after 20 years of marriage. I was sexually abused at 13 and then once at 20 by my brother. He is my only
Hi all. I suffer from severe anxiety and PTSD. I’m a 62 year old woman. I moved from pa to fl two years ago with my adopted daughter who is now 17 and a senior in high school. I divorced my husband after 20 years of marriage. I was sexually abused at 13 and then once at 20 by my brother. He is my only
EFTA
in
Anxiety and Depression Support
1 month ago
T3 T4 Dosing
Hi, I took levothyroxine only for years (since 2007) - constant adjustment of dose between 75mcg and 100/75mcg alternate days as always had hypo symptoms. Most recent dose 100/75mcg daily. Just seen endo (well endo's registrar actually) and started on T3/T4 combination therapy. He put me on a dose
Hi, I took levothyroxine only for years (since 2007) - constant adjustment of dose between 75mcg and 100/75mcg alternate days as always had hypo symptoms. Most recent dose 100/75mcg daily. Just seen endo (well endo's registrar actually) and started on T3/T4 combination therapy. He put me on a dose
JoanC645
in
Thyroid UK
1 month ago
Virtual Therapy and OT for ADHD- Any Advice?
I’m a 29-year-old female who’s been dealing with ADHD since 2015. I’ve tried a bunch of treatments and strategies, but I’m still having trouble with focus and prioritizing tasks, which affects both my work and personal life. Recently, I started a demanding job that makes it tough to fit in-person appointments
I’m a 29-year-old female who’s been dealing with ADHD since 2015. I’ve tried a bunch of treatments and strategies, but I’m still having trouble with focus and prioritizing tasks, which affects both my work and personal life. Recently, I started a demanding job that makes it tough to fit in-person appointments
GreenGrass24
in
CHADD's Adult ADHD Support
1 month ago
Stem Cell Therapy for Parkinson - Current trials Patients experiences
Co-organized by ISSCR and the WPC, this open access webinar will provide a high-level outlook of current cell therapy research and clinical applications for Parkinson’s disease. Presenters will highlight advances in cell and gene therapies, including basic research discoveries and the latest clinical
Co-organized by ISSCR and the WPC, this open access webinar will provide a high-level outlook of current cell therapy research and clinical applications for Parkinson’s disease. Presenters will highlight advances in cell and gene therapies, including basic research discoveries and the latest clinical
Farooqji
in
Cure Parkinson's
1 month ago
Stem Cell Therapy for Parkinson - Current trials Patients experiences
Co-organized by ISSCR and the WPC, this open access webinar will provide a high-level outlook of current cell therapy research and clinical applications for Parkinson’s disease. Presenters will highlight advances in cell and gene therapies, including basic research discoveries and the latest clinical
Co-organized by ISSCR and the WPC, this open access webinar will provide a high-level outlook of current cell therapy research and clinical applications for Parkinson’s disease. Presenters will highlight advances in cell and gene therapies, including basic research discoveries and the latest clinical
Farooqji
in
Cure Parkinson's
1 month ago
Patient enrollment begins in study of novel light therapy for Parkinson’s disease
The first 100 patients have been enrolled in a clinical trial investigating a novel light therapy device intended to treat individuals with Parkinson’s disease, according to the manufacturer.Enrollees are expected to use the Celeste device within their own homes for 1 hour per day when doing activities
The first 100 patients have been enrolled in a clinical trial investigating a novel light therapy device intended to treat individuals with Parkinson’s disease, according to the manufacturer.Enrollees are expected to use the Celeste device within their own homes for 1 hour per day when doing activities
Farooqji
in
Cure Parkinson's
1 month ago
A Webinair discussing the potential of Gene Therapy as treatment for Ataxia.
🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on Gene Therapy. In this session, Dr. Carolyn Yrigollen will teach us what gene therapy is, the different types of gene therapy, and how gene therapy could be used to treat Ataxia in the future. We will also discuss the limitations
🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on Gene Therapy. In this session, Dr. Carolyn Yrigollen will teach us what gene therapy is, the different types of gene therapy, and how gene therapy could be used to treat Ataxia in the future. We will also discuss the limitations
wobblybee
in
Ataxia UK
2 months ago
Never been this low in 9 and a half years!
Hi It has been a long time since I have posted anything as have been severely ill with my asthma for the past two and a half years so that has taken all my time.To cut a long story short I am now on biological therapy which has so far changed my life!. Anyway I am now doing the dead slow method or whatever
Hi It has been a long time since I have posted anything as have been severely ill with my asthma for the past two and a half years so that has taken all my time.To cut a long story short I am now on biological therapy which has so far changed my life!. Anyway I am now doing the dead slow method or whatever
pmrdec112014
in
PMRGCAuk
2 months ago
Update on my son Adam
Hi All This is just an update on how my 8-year-old boy is doing after his Hemorrhagic stroke. We're slowly making progress with his motor skills, most of the time he crawls about the house but with help from me walking a little. his appetite has improved a lot so very happy on that side of things.
Hi All This is just an update on how my 8-year-old boy is doing after his Hemorrhagic stroke. We're slowly making progress with his motor skills, most of the time he crawls about the house but with help from me walking a little. his appetite has improved a lot so very happy on that side of things.
leigh802
in
ERIC
2 months ago
I GAVE UP.
I will try and be short about my story. It is a snapshot of events whilst I was on Levothyroxine for more or less 25 yrs. I never felt well and was never referred to an endocrinologist. I gained weight, my hair thinned. I had problems not only with my voice, but swallowing food. I had brain fog, acute
I will try and be short about my story. It is a snapshot of events whilst I was on Levothyroxine for more or less 25 yrs. I never felt well and was never referred to an endocrinologist. I gained weight, my hair thinned. I had problems not only with my voice, but swallowing food. I had brain fog, acute
Whiterose15
in
Thyroid UK
2 months ago
Dealing with minor Speech issues.
🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frustrating. If this becomes a real problem we’re generally referred to a Speech Therapist..and there is also the option of joining AtaxiaUKs link to Speech Therapy. Something else I’ve seen recommended..is learning another
🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frustrating. If this becomes a real problem we’re generally referred to a Speech Therapist..and there is also the option of joining AtaxiaUKs link to Speech Therapy. Something else I’ve seen recommended..is learning another
wobblybee
in
Ataxia UK
2 months ago
Tagrisso users
Hi everyone. I do hope today is a 'good' day for you. I was wondering if there is anyone on here that, like myself, is receiving targeted therapy with a drug called Tagrisso? Despite my oncologist helping with additional side effects advice and treatment, I'm finding it very hard going and would like
Hi everyone. I do hope today is a 'good' day for you. I was wondering if there is anyone on here that, like myself, is receiving targeted therapy with a drug called Tagrisso? Despite my oncologist helping with additional side effects advice and treatment, I'm finding it very hard going and would like
Mrsmilo
in
The Roy Castle Lung Cancer Foundation
2 months ago
Adjusting Timing of T3 Before Testing
Many of us adjust the timing of what we take for testing. My question concerns combination therapy with T3 taken in two doses. Let's say the day before testing is Monday and assume the blood draw takes place Tuesday at 8 am. Easy enough to take Levo at 8 am Monday. Suppose one usually takes T3 in
Many of us adjust the timing of what we take for testing. My question concerns combination therapy with T3 taken in two doses. Let's say the day before testing is Monday and assume the blood draw takes place Tuesday at 8 am. Easy enough to take Levo at 8 am Monday. Suppose one usually takes T3 in
wellness1
in
Thyroid UK
2 months ago
PPPD and vestibular disorders
Did you know that many of the underlying issues in dizziness are related to the autonomic nervous system? Or that sleep, diet and stress can play a role? Re-actives team program centres on an holistic approach to dizziness; an approach that includes looking at your movement, muscular factors, lifestyle
Did you know that many of the underlying issues in dizziness are related to the autonomic nervous system? Or that sleep, diet and stress can play a role? Re-actives team program centres on an holistic approach to dizziness; an approach that includes looking at your movement, muscular factors, lifestyle
Lady4
in
Functional Neurological Disorder - FND Hope
2 months ago
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