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DESPERATE, UNDIAGNOSED AND VERY LOST
Hi everyone - can I just first say thanks to anyone who gives me the time to read this. I am feeling so very desperate and alone and knowing someone might be out there just means so much. Until 18 months ago I was a very sporty, life-loving, adventurous person who had been travelling the world for the
Hi everyone - can I just first say thanks to anyone who gives me the time to read this. I am feeling so very desperate and alone and knowing someone might be out there just means so much. Until 18 months ago I was a very sporty, life-loving, adventurous person who had been travelling the world for the
PurpleNel
in
Thyroid UK
3 years ago
Speech Recognition
I had a speech recognition test which came back very low in one ear. In that same ear I have tinnitus and hyperacusis. I would appreciate any advice or help with this or further tests that can be done I had an MRI which came back clear
I had a speech recognition test which came back very low in one ear. In that same ear I have tinnitus and hyperacusis. I would appreciate any advice or help with this or further tests that can be done I had an MRI which came back clear
jojomac23
in
Tinnitus UK
3 years ago
Greater Understanding of PV, ET Drives Potential New Treatment Options
“Continued high-impact research may soon foster the development of disease-modifying therapies for PV and ET and satisfy this need for the optimal management of patients with these MPNs,” they said. Researchers are also determining how to best optimize current treatment options, including JAK inhibitors
“Continued high-impact research may soon foster the development of disease-modifying therapies for PV and ET and satisfy this need for the optimal management of patients with these MPNs,” they said. Researchers are also determining how to best optimize current treatment options, including JAK inhibitors
Manouche
in
MPN Voice
3 years ago
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Jakavi. - PV
Hi … can anyone tell me “why” jakavi is easily accessible and affordable in the U.K. ??? Or even Europe????? Would really like to know … I’m in Ontario Canada and my hematologist is close to preparing to plead with our government to allow me to have jakavi on compassionate grounds because my “pinching
Hi … can anyone tell me “why” jakavi is easily accessible and affordable in the U.K. ??? Or even Europe????? Would really like to know … I’m in Ontario Canada and my hematologist is close to preparing to plead with our government to allow me to have jakavi on compassionate grounds because my “pinching
Hidden
in
MPN Voice
3 years ago
Polymorphic light eruption?
Hi all, hope you are all keeping ok, can I ask your advice please? Got blisters/hot/itchy skin on arms and feet only. I had sun cream on arms but not on feet and both areas affected the same. Where my flip flops had been there is no rash/blisters. Never had this before, only just finished an 8 week
Hi all, hope you are all keeping ok, can I ask your advice please? Got blisters/hot/itchy skin on arms and feet only. I had sun cream on arms but not on feet and both areas affected the same. Where my flip flops had been there is no rash/blisters. Never had this before, only just finished an 8 week
bathouse
in
Hughes Syndrome APS Forum
3 years ago
Been dealing with an issue for 14 months and can’t get diagnosed!! Opinions and thoughts needed!
Hi all, thought I’d reach out and share what I assume is a gastro-related issue that I’ve been dealing with for a while (approx 2 years), in hope to get some ideas and direction on how to get this diagnosed and treated within the NHS - because so far, with all the visits to the GP, trips to the hospital
Hi all, thought I’d reach out and share what I assume is a gastro-related issue that I’ve been dealing with for a while (approx 2 years), in hope to get some ideas and direction on how to get this diagnosed and treated within the NHS - because so far, with all the visits to the GP, trips to the hospital
jmoose
in
IBS Network
3 years ago
Time running out?
I have lots of health issues but last week was given the latest,upper spine cancer with floating tumours.how the hell does anyone cope with being told that? Now with pain management clinic to try to help.im in pieces!
I have lots of health issues but last week was given the latest,upper spine cancer with floating tumours.how the hell does anyone cope with being told that? Now with pain management clinic to try to help.im in pieces!
Caz4
in
Pain Concern
3 years ago
Undiagnosed and positive ANA
I joined in 2013 with a positive ANA Test 1:80 Nucleolar pattern suggesting schleroderma. I had follow up tests and no diagnosis. I’ve had 3 failed Endoscopes, as I woke up from sedation grabbing the camera, so Gastro has never found out, why I choke when eating, barium swallow confirmed GERD, I have
I joined in 2013 with a positive ANA Test 1:80 Nucleolar pattern suggesting schleroderma. I had follow up tests and no diagnosis. I’ve had 3 failed Endoscopes, as I woke up from sedation grabbing the camera, so Gastro has never found out, why I choke when eating, barium swallow confirmed GERD, I have
angelharley
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
PA or Chronic Gastric Atrophy?
Haven’t posted for a long time but would like to pick your expert brains, as I’m having a few issues at the moment and speaking to a Rheumatologist this evening. Also on the emergency list for a hip replacement. Anyway- here goes. 2013 Low B12 223 and Positive Gastric Parietal Abs. IF Neg On going
Haven’t posted for a long time but would like to pick your expert brains, as I’m having a few issues at the moment and speaking to a Rheumatologist this evening. Also on the emergency list for a hip replacement. Anyway- here goes. 2013 Low B12 223 and Positive Gastric Parietal Abs. IF Neg On going
angelharley
in
Pernicious Anaemia Society
3 years ago
ANXIETY SUFFERER ALONG WITH LUPUS
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Goinglong10
in
LUPUS UK
3 years ago
Permanently semi-conscious state
Hi I'm new here. My dad has had PSP for about 7 years now and it certainly now feels like he's entering his last days/weeks. One thing we're all very confused about is that he seems to be almost permanently sleeping or semi conscious. He does occasionally open his eyes, he's actually lost all ability
Hi I'm new here. My dad has had PSP for about 7 years now and it certainly now feels like he's entering his last days/weeks. One thing we're all very confused about is that he seems to be almost permanently sleeping or semi conscious. He does occasionally open his eyes, he's actually lost all ability
Ado78
in
PSP Association
3 years ago
Advice for when GP won't act?
Hi guys, I've now had a second intrinsic factor antibody test (privately). Both my private tests came out positive for IF, but the middle test I took, which was with the NHS, came out negative. The GP though thinks I have chronic fatigue syndrome as my cells are normal size and B12 blood levels are coming
Hi guys, I've now had a second intrinsic factor antibody test (privately). Both my private tests came out positive for IF, but the middle test I took, which was with the NHS, came out negative. The GP though thinks I have chronic fatigue syndrome as my cells are normal size and B12 blood levels are coming
JSD100
in
Pernicious Anaemia Society
3 years ago
Chinese herbs - so far, so good!
I have suffered from RLS for more than 60 years and it has gotten steadily worse with age. (I am now 84.) About three weeks ago, I stumbled on this two-year-old online article about Chinese herbs for RLS: https://www.adiantumschool.com/single-post/2019-02-06-herbs-for-restless-leg-syndrome I had tried
I have suffered from RLS for more than 60 years and it has gotten steadily worse with age. (I am now 84.) About three weeks ago, I stumbled on this two-year-old online article about Chinese herbs for RLS: https://www.adiantumschool.com/single-post/2019-02-06-herbs-for-restless-leg-syndrome I had tried
Skysgal
in
Restless Legs Syndrome
3 years ago
Diagnosed with mid-oesophageal diverticulum
Hello everyone, I've been diagnosed with a diverticulum which is situated on the front left side of my oesophagus. I was hoping to reach out and communicate with others who might have a similar diverticulum. My diverticulum was discovered during a barium swallow and it's about 2cm in size. I also have
Hello everyone, I've been diagnosed with a diverticulum which is situated on the front left side of my oesophagus. I was hoping to reach out and communicate with others who might have a similar diverticulum. My diverticulum was discovered during a barium swallow and it's about 2cm in size. I also have
romeo
in
Oesophageal & Gastric Cancer
3 years ago
My Son has Hyperacusis...
Hi, My son has Hyperacusis and he is only 13yrs of age and its really effecting his way of life, makes him very anxious and withdrawn. we come from Kent and looking for any kind of help or support...? Many Thanks
Hi, My son has Hyperacusis and he is only 13yrs of age and its really effecting his way of life, makes him very anxious and withdrawn. we come from Kent and looking for any kind of help or support...? Many Thanks
Tomuchnoise
in
British Tinnitus Association
3 years ago
More advice please prior to GP consultation
Hi experts. I upped my pred dose to 20 mg 2 weeks ago believing I had PMR flare after dropping to 15 for 2 weeks. But with your knowledge and experience you suggested Piriformis syndrome - am still struggling with the PS pains but am fortunately having some sports therapy massage and stretching and exercising
Hi experts. I upped my pred dose to 20 mg 2 weeks ago believing I had PMR flare after dropping to 15 for 2 weeks. But with your knowledge and experience you suggested Piriformis syndrome - am still struggling with the PS pains but am fortunately having some sports therapy massage and stretching and exercising
Pocketdog
in
PMRGCAuk
3 years ago
Pine bark extract supplement?
Has anyone tried a supplement with pine bark extract? The book Finally Focused highly recommends it. Just had a bad experience with Aderol after methylphenidate messed with my son’s sleep so I’m not really into this expensive trial & error method of drug experimentation. Of course supplements are expensive
Has anyone tried a supplement with pine bark extract? The book Finally Focused highly recommends it. Just had a bad experience with Aderol after methylphenidate messed with my son’s sleep so I’m not really into this expensive trial & error method of drug experimentation. Of course supplements are expensive
StellarMom
in
CHADD's ADHD Parents Together
3 years ago
To Work or Not to Work.
There has been some recent discussions around the subject of returning to work and how compatible this might be with a diagnosis of PMRGCA. I too am currently having this mental debate as I prepare for a 3rd and final attempt at returning to work in a primary school. I'm not posting this particularly
There has been some recent discussions around the subject of returning to work and how compatible this might be with a diagnosis of PMRGCA. I too am currently having this mental debate as I prepare for a 3rd and final attempt at returning to work in a primary school. I'm not posting this particularly
Kendrew
in
PMRGCAuk
3 years ago
Experiences of paracentesis (drainage of ascites)
Hello As you may remember, Ovacome are working with Dr Roshan Agarwal, consultant oncologist at Northampton General Hospital, to help clinicians better understand the patient experience of paracentesis, also known as ascites drainage. Last year we carried out a survey into experiences of paracentesis
Hello As you may remember, Ovacome are working with Dr Roshan Agarwal, consultant oncologist at Northampton General Hospital, to help clinicians better understand the patient experience of paracentesis, also known as ascites drainage. Last year we carried out a survey into experiences of paracentesis
OvacomeSupport
Administrator
in
My Ovacome
3 years ago
Doctor visit
Hi everyone hope all is well. We finally had our Dr. visit with Dr Bang from John Hopkins after over a year. She said that Rick is in the last stage and told me to take him off Tramadol and to only give him clonazepam only when needed. She also gave him some new medicine Trazodone 50 mg for his sleeping
Hi everyone hope all is well. We finally had our Dr. visit with Dr Bang from John Hopkins after over a year. She said that Rick is in the last stage and told me to take him off Tramadol and to only give him clonazepam only when needed. She also gave him some new medicine Trazodone 50 mg for his sleeping
Hidden
in
PSP Association
3 years ago
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