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Beginning to readjust to life with PMR
As you may know, I am fairly new on here. Diagnosed promptly at the beginning of March I am learning how to readjust and learning what I can and can't do. I did far too much on Friday so I know I will rest all day today . I have ordered some decent frozen meals from COOK for the days I'm too tired.
As you may know, I am fairly new on here. Diagnosed promptly at the beginning of March I am learning how to readjust and learning what I can and can't do. I did far too much on Friday so I know I will rest all day today . I have ordered some decent frozen meals from COOK for the days I'm too tired.
Jigsawlass
in
PMRGCAuk
2 years ago
Recently diagnosed with anxiety, looking for some guidance and understanding
Hello everyone. I am new here. I have been struggling with anxiety lately and I wanted to share my experience here and speak with anyone who is interested in talking to me about it. I’d like to hear from anyone, whether you are having a similar experience as me or whether you’re just open to sharing
Hello everyone. I am new here. I have been struggling with anxiety lately and I wanted to share my experience here and speak with anyone who is interested in talking to me about it. I’d like to hear from anyone, whether you are having a similar experience as me or whether you’re just open to sharing
Smink
in
Anxiety and Depression Support
2 years ago
ALDH2 deficiency advice
I have had years of gut problems, partly, I’m sure, connected to my hypothyroidism, lactose intolerance and gluten intolerance, however I’m not sure if it’s all due to my thyroid. I am wondering whether I may also have ALDH2 deficiency. If you’re unfamiliar with this, it’s a common genetic mutation,
I have had years of gut problems, partly, I’m sure, connected to my hypothyroidism, lactose intolerance and gluten intolerance, however I’m not sure if it’s all due to my thyroid. I am wondering whether I may also have ALDH2 deficiency. If you’re unfamiliar with this, it’s a common genetic mutation,
bluejourney
in
Thyroid UK
2 years ago
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Living with assymetry
Hi! I suffered a broken jaw after an attack from my ex boyfriend nearly 8 years ago now. I’ve been left with an asymmetrical face on both sides and it really affects me day to day. Some times I’m better than Others but i think about it every single day and it makes me really depressed. Has anyone been
Hi! I suffered a broken jaw after an attack from my ex boyfriend nearly 8 years ago now. I’ve been left with an asymmetrical face on both sides and it really affects me day to day. Some times I’m better than Others but i think about it every single day and it makes me really depressed. Has anyone been
Bc1888
in
Changing Faces
2 years ago
Do you have views on newborn genetic testing for the ataxias?
Do you have views on whether it's right to test for conditions that don't have cures, such as the ataxias? It's quite contraversial among some ataxia clincians. Genomics England has announced that in 2023 it will begin a research study to explore the potential of using whole genome sequencing to detect
Do you have views on whether it's right to test for conditions that don't have cures, such as the ataxias? It's quite contraversial among some ataxia clincians. Genomics England has announced that in 2023 it will begin a research study to explore the potential of using whole genome sequencing to detect
SueMillman
Ataxia UK
in
Ataxia UK
2 years ago
Anyone with Exon 12 mutation out there?
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
gvibes
in
MPN Voice
2 years ago
Dosing Guanfacine 1mg XR every other day an option?
My daughter has on and off success with Guanfacine 1mg. So…all is fabulous for 4 weeks and then her low mood arises. We’ve tracked her period and it does NOT consistently align with the time right before menstration, which we know can play a role.Higher dosing has caused mild depressive mood and from
My daughter has on and off success with Guanfacine 1mg. So…all is fabulous for 4 weeks and then her low mood arises. We’ve tracked her period and it does NOT consistently align with the time right before menstration, which we know can play a role.Higher dosing has caused mild depressive mood and from
Bootsie1
in
CHADD's ADHD Parents Together
2 years ago
Genetic testing results questions
Thank you to all who have replied to my post. I am still bewildered and in shock. I will get results from genetic testing this week and have most likely MF Is there a list of question I should ask regarding results, prognosis and treatment. Can you get copies of histology reports on the NHS? Any advice
Thank you to all who have replied to my post. I am still bewildered and in shock. I will get results from genetic testing this week and have most likely MF Is there a list of question I should ask regarding results, prognosis and treatment. Can you get copies of histology reports on the NHS? Any advice
artydutch
in
MPN Voice
2 years ago
Where could I get a genetic test done for B12 non absorption please?
I am coeliac but have been oob a strict gluten free diet for years. But although blood tests for B12 come back normal or sometimes over normal, I have the symptoms of low b12. I already have the Gio2 gene from both parents. Also another one from each that makes me prone to certain cancers. So I wonder
I am coeliac but have been oob a strict gluten free diet for years. But although blood tests for B12 come back normal or sometimes over normal, I have the symptoms of low b12. I already have the Gio2 gene from both parents. Also another one from each that makes me prone to certain cancers. So I wonder
Everdean
in
Pernicious Anaemia Society
2 years ago
Life long Suffering
I've suffered from depression as far back as a child as I can remember. My family dynamics was a physical, mental and emotional abuse by a parent. I've gone thru numerous medications, counselling, group therapies, etc. Although some of these examples have been helpful, I still find myself going down
I've suffered from depression as far back as a child as I can remember. My family dynamics was a physical, mental and emotional abuse by a parent. I've gone thru numerous medications, counselling, group therapies, etc. Although some of these examples have been helpful, I still find myself going down
Hidden
in
Anxiety and Depression Support
2 years ago
Good news from RO
Hi, first visit with radiologist oncologist yesterday. I was quite encouraged. After- visit report: "Curable" "won't affect life expectancy" "Very small volume disease, quite favorable prostate cancer." He said there are 5 points that qualify me for "Active Surveillance" and said I meet 4 of them. Last
Hi, first visit with radiologist oncologist yesterday. I was quite encouraged. After- visit report: "Curable" "won't affect life expectancy" "Very small volume disease, quite favorable prostate cancer." He said there are 5 points that qualify me for "Active Surveillance" and said I meet 4 of them. Last
UncleBud
in
Prostate Cancer Network
2 years ago
Counselling for psychosis
Do anyone have a zoom recommendation for counselling or psychologist with psychosis experience? I want to talk about the traumatic experience of labour and the afterwards before I received helped. I have a current councillor but she has no experience in it. I been reliving the labour and the Psychosis
Do anyone have a zoom recommendation for counselling or psychologist with psychosis experience? I want to talk about the traumatic experience of labour and the afterwards before I received helped. I have a current councillor but she has no experience in it. I been reliving the labour and the Psychosis
CaroN57
in
Action on Postpartum Psychosis
2 years ago
How do you know when a job is not a good fit due to ADHD weaknesses or if you need to quit? Would career coaching help?
I've been at my job for 6 1/2 years. I have a boos who cares and really wants me to succeed but she needs results. I have had issues with time management, prioritization, lack of confidence, indecisiveness... and have been unable to meet productivity expectations for almost the entire time. My boss
I've been at my job for 6 1/2 years. I have a boos who cares and really wants me to succeed but she needs results. I have had issues with time management, prioritization, lack of confidence, indecisiveness... and have been unable to meet productivity expectations for almost the entire time. My boss
Chickadee1
in
CHADD's Adult ADHD Support
2 years ago
Webinar- Thursday 28th April 6.30pm
On Thursday 28 April at 6.30pm, where we will be joined by professor Andrew Webster who will be discussing genetics and eye disease and the role of genetic testing. If you would like to join this webinar, please use the link belwo: https://us02web.zoom.us/webinar/register/WN_m69hDkeNT_CtH34BAbBt7w
On Thursday 28 April at 6.30pm, where we will be joined by professor Andrew Webster who will be discussing genetics and eye disease and the role of genetic testing. If you would like to join this webinar, please use the link belwo: https://us02web.zoom.us/webinar/register/WN_m69hDkeNT_CtH34BAbBt7w
Kelly_macularsociety
Partner
in
Macular Society
2 years ago
Bone biopsy failures. Any advice?
Hello I have had two attempts at a bone biopsy for genetic testing to guide future treatment options for M1 mcrpc (no visceral mets). Both failed -- the first because the sample was said to have been contaminated; the second because there was insufficient tissue. Has anyone else had this kind of problem
Hello I have had two attempts at a bone biopsy for genetic testing to guide future treatment options for M1 mcrpc (no visceral mets). Both failed -- the first because the sample was said to have been contaminated; the second because there was insufficient tissue. Has anyone else had this kind of problem
MarkEmrys
in
Advanced Prostate Cancer
2 years ago
Sharing a Story.....
I just replied to a post with a memory, and thought it might be good to share with more people: Here goes..... Even Therapists have bad days. Imagine if your whole work day, every day, was spent listening to unhappy or negative people, then going home and wondering if you really make any difference
I just replied to a post with a memory, and thought it might be good to share with more people: Here goes..... Even Therapists have bad days. Imagine if your whole work day, every day, was spent listening to unhappy or negative people, then going home and wondering if you really make any difference
TrustYourSoul
in
Anxiety and Depression Support
2 years ago
Has anyone done any genetic testing for B12 deficiency? If so, what ultimately did you achieve?
Has anyone done any genetic testing for B12 deficiency? If so, what ultimately did you achieve? I'm looking to get tested as I want evidence that I have a problem processing B12. My hope is that it will put an end to the common dismissal that I/we experience. "B12 isn't a [or your] problem". Also, here's
Has anyone done any genetic testing for B12 deficiency? If so, what ultimately did you achieve? I'm looking to get tested as I want evidence that I have a problem processing B12. My hope is that it will put an end to the common dismissal that I/we experience. "B12 isn't a [or your] problem". Also, here's
B12life
in
Pernicious Anaemia Society
2 years ago
Looking for ADHD support, diagnosis, counseling etc in Philly area.
I am an adult with ADHD diagnosed in my teenage years. I lost my papers a while back and since becoming a mom of two and in early menopause (I'm 43) my symptoms are so difficult and effecting my mental health and production. I feel like I am swimming just to keep my head above water and it is unfair
I am an adult with ADHD diagnosed in my teenage years. I lost my papers a while back and since becoming a mom of two and in early menopause (I'm 43) my symptoms are so difficult and effecting my mental health and production. I feel like I am swimming just to keep my head above water and it is unfair
8Apples
in
CHADD's Adult ADHD Support
2 years ago
I feel like my parents seriously let me down.
Hi, new here and looking to vent. I'm sorry if this reads like a rant, but I'm just so angry and frustrated right now. Background: I'm in my mid-twenties. Second of five. My parents are immigrants; my dad was a corrections officer, and my mom was a nurse (not working right now). My older brother (
Hi, new here and looking to vent. I'm sorry if this reads like a rant, but I'm just so angry and frustrated right now. Background: I'm in my mid-twenties. Second of five. My parents are immigrants; my dad was a corrections officer, and my mom was a nurse (not working right now). My older brother (
DarkDragonfly24
in
CHADD's Adult ADHD Support
2 years ago
How has depression affected you and what supports do you need to thrive?
Hello all! My name is Shelby. I'm a grad student pursuing a degree in Mental Health Counseling in New York State. As someone who is looking to enter the mental health field, as well as a family member of someone who has struggled with depression, I'm looking for feedback and insight. Feel free to answer
Hello all! My name is Shelby. I'm a grad student pursuing a degree in Mental Health Counseling in New York State. As someone who is looking to enter the mental health field, as well as a family member of someone who has struggled with depression, I'm looking for feedback and insight. Feel free to answer
Shelby_MHC
in
Anxiety and Depression Support
2 years ago
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