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Living with PV for 47 years after father diagnosed days earlier.
In 1968-9 my father was diagnosed with PV and Spherocytosis by VA. His doctors suggested his direct family members also be test to see if disorders were hereditary. Out of 6 people, his mother, older brother, older sister, oldest daughter, son, and youngest daughter-me I was found to also have
In 1968-9 my father was diagnosed with PV and Spherocytosis by VA. His doctors suggested his direct family members also be test to see if disorders were hereditary. Out of 6 people, his mother, older brother, older sister, oldest daughter, son, and youngest daughter-me I was found to also have
Hidden
in
MPN Voice
9 years ago
Caring for a person with AF
My daughter is 26 and has congenital heart disease, she was admitted to hospital 3 weeks ago and diagnosed with AF. During 26 years of hospital visits this had never been mentioned or picked up before, can it have started all of a sudden. She has been put on warfarin, digoxin and verapamil. I am worried
My daughter is 26 and has congenital heart disease, she was admitted to hospital 3 weeks ago and diagnosed with AF. During 26 years of hospital visits this had never been mentioned or picked up before, can it have started all of a sudden. She has been put on warfarin, digoxin and verapamil. I am worried
dianef2303
in
AF Association
9 years ago
5 years on and no further forward
Hi, my symptoms started summer of 2010. I had a constant tremor in my right hand which quickly escalated to whole body jerks and spasms within a few months. I had suffered with a constant headache for a number of years, and had regular migraines. My GP referred me to a neurologist who I saw for a couple
Hi, my symptoms started summer of 2010. I had a constant tremor in my right hand which quickly escalated to whole body jerks and spasms within a few months. I had suffered with a constant headache for a number of years, and had regular migraines. My GP referred me to a neurologist who I saw for a couple
Alison2010
in
Functional Neurological Disorder - FND Hope
9 years ago
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Cervical spondylosis
I was diagnosed with CS December 2011, just woke up one morning with a sore neck, I'd say I've tried majority of painkillers, none worked, I'm now taking MST continus, prolonged released morphine tablets 50mg twice a day, they ease the neck pain but do nothing for shoulders, arms, hands, fingers, legs
I was diagnosed with CS December 2011, just woke up one morning with a sore neck, I'd say I've tried majority of painkillers, none worked, I'm now taking MST continus, prolonged released morphine tablets 50mg twice a day, they ease the neck pain but do nothing for shoulders, arms, hands, fingers, legs
Pam6971
in
Pain Concern
9 years ago
Obstructive sleep aponea
Hi everyone hope your all as well as can be ive just been diagnosed with obstructive sleep aponea and am getting a CPAP machine tomorrow i am a bit worried about using it as i hate anything blowing in my face looking for some helpfull advice on it if anyone else has it thanks
Hi everyone hope your all as well as can be ive just been diagnosed with obstructive sleep aponea and am getting a CPAP machine tomorrow i am a bit worried about using it as i hate anything blowing in my face looking for some helpfull advice on it if anyone else has it thanks
brambles65
in
Lung Conditions Community Forum
9 years ago
2 week old superstars
Well, today is Holly and Poppy's 2 week milestone. The girls are currently going from strength to strength and are progressing well. They have both come off their ventilators and are both on CPAP (a continuous supply of pressurised oxygen). Both are having some of mummies milk, Poppy is taking in a
Well, today is Holly and Poppy's 2 week milestone. The girls are currently going from strength to strength and are progressing well. They have both come off their ventilators and are both on CPAP (a continuous supply of pressurised oxygen). Both are having some of mummies milk, Poppy is taking in a
Completenewbie
in
Pregnancy and Parenting Support
9 years ago
Home Nebuliser plus CPAP (Continuous Positive Airway Pressure)
Using Salbutamol 2mg/ml nebuliser solution (5mg/2.5ml) ampoule, combined with Ipatroprium Bromide 500 micrograms/2ml nebuliser solution, upto 4 times a day. CPAP every night during sleeping hours. How many are on a combination like this. When traveling by air, have to advise airline well in advance
Using Salbutamol 2mg/ml nebuliser solution (5mg/2.5ml) ampoule, combined with Ipatroprium Bromide 500 micrograms/2ml nebuliser solution, upto 4 times a day. CPAP every night during sleeping hours. How many are on a combination like this. When traveling by air, have to advise airline well in advance
I8tories
in
Asthma Community Forum
9 years ago
Mayonnaise for PD?
I don't like coconut oil. I like mayonnaise. And now they have them with no saturated fast and high omega threes. It seems to work A LOT better than coconut oil. my thinking is much clearer at least half a day after have 1 part bread to 2 parts mayonnaise. A tablespoon does my brain really, really
I don't like coconut oil. I like mayonnaise. And now they have them with no saturated fast and high omega threes. It seems to work A LOT better than coconut oil. my thinking is much clearer at least half a day after have 1 part bread to 2 parts mayonnaise. A tablespoon does my brain really, really
zawy
in
Cure Parkinson's
9 years ago
Thyroid
I have a growth on my thyroid which is growing downwards towards my heart. I have a CPAP mask to wear when I sleep which helps to keep my airways clear as the growth is obstructing my airway. I wanted to know if I can get a copy of my CT scan, which I can show my family so they understand better what
I have a growth on my thyroid which is growing downwards towards my heart. I have a CPAP mask to wear when I sleep which helps to keep my airways clear as the growth is obstructing my airway. I wanted to know if I can get a copy of my CT scan, which I can show my family so they understand better what
Lynn262
in
Thyroid UK
9 years ago
Nebuliser and CPAP (Continuous Positive Airway Pressure)
I have both these machines at home, the nebuliser, issued by the Royal Brompton Hospital, had since 2000 and the CPAP suggested required after Sleep Apnea study, whilst an inpatient, on 12 days, continuous iv amnophylin. Bought my own as ones offered by NHS, we're single pressure, and suggested variable
I have both these machines at home, the nebuliser, issued by the Royal Brompton Hospital, had since 2000 and the CPAP suggested required after Sleep Apnea study, whilst an inpatient, on 12 days, continuous iv amnophylin. Bought my own as ones offered by NHS, we're single pressure, and suggested variable
I8tories
in
Asthma Community Forum
9 years ago
Lost My Dad
First I want to say thanks to everyone who posts here. The stories of recovery kept me positive for my dad. He was 72 and had a brain aneurysm with SAH. My mom found him in the AM with his CPAP he was not responsive and had vomited in his CPAP. EMS came and cleared his airways he had aspirated and
First I want to say thanks to everyone who posts here. The stories of recovery kept me positive for my dad. He was 72 and had a brain aneurysm with SAH. My mom found him in the AM with his CPAP he was not responsive and had vomited in his CPAP. EMS came and cleared his airways he had aspirated and
kchamilton
in
Headway
9 years ago
Poor sleep, horrible headaches, muscle cramping in legs
If anyone has any suggestions as to what might help with making me sleep at night, I will be forever grateful. I have been having problems for quite a long time, but it has gotten to the point where I have at least 1 or 2 nights a week that I don't sleep at all. I will be awake for almost 24 hours and
If anyone has any suggestions as to what might help with making me sleep at night, I will be forever grateful. I have been having problems for quite a long time, but it has gotten to the point where I have at least 1 or 2 nights a week that I don't sleep at all. I will be awake for almost 24 hours and
becca10
in
Hughes Syndrome APS Forum
9 years ago
MST CONTINUS -Morphine
Hi, I've been on varying doses of MST continus, slow release morphine and I am curentky on 30x2 daily, ie 30mg on a morning and 30mg at night. It's for joint pain due to RA/PsA and for Cancer Pain. I also take a course of Prednisilone now and again and I a currently on 20mg daily but will go down to
Hi, I've been on varying doses of MST continus, slow release morphine and I am curentky on 30x2 daily, ie 30mg on a morning and 30mg at night. It's for joint pain due to RA/PsA and for Cancer Pain. I also take a course of Prednisilone now and again and I a currently on 20mg daily but will go down to
Slightly_ginger
in
NRAS
9 years ago
Help with Diagnosis/Treatment - Fatigue, Fog, etc
Male, 44, 6'3", 220 lbs. Late-summer 2013, OVERNIGHT, massive fatigue set in, a significant loss in focus, concentration, short-term memory, body aches, chronic low-grade fever, occasionally racing heart (high BP and resting pulse of 140 or higher). Never had any problems like this before. Never struggled
Male, 44, 6'3", 220 lbs. Late-summer 2013, OVERNIGHT, massive fatigue set in, a significant loss in focus, concentration, short-term memory, body aches, chronic low-grade fever, occasionally racing heart (high BP and resting pulse of 140 or higher). Never had any problems like this before. Never struggled
HoldenDeBagg
in
Myalgic Encephalomyelitis Community
9 years ago
Sleep apnoea
Hi,has this happened to anyone else,took hubby's cpap machine for his yearly data download only to be told that for 3 months mid way through the was not data recorded so in their opinion he had not been using the machine so they have taken it off him while the internal memory is checked,this has caused
Hi,has this happened to anyone else,took hubby's cpap machine for his yearly data download only to be told that for 3 months mid way through the was not data recorded so in their opinion he had not been using the machine so they have taken it off him while the internal memory is checked,this has caused
till3y20
in
Fibromyalgia Action UK
9 years ago
Vision problems from anxiety anpossibly derealization
Hi My name is Jose I'm a 25 yr old man I always had bad anxiety in my life . a few that ruined relationships with former gfs and even family members , but this past year it has been a living hell / nightmare . doctors think I Need to see a shrink, I believe I need to also . but since when does anxiety
Hi My name is Jose I'm a 25 yr old man I always had bad anxiety in my life . a few that ruined relationships with former gfs and even family members , but this past year it has been a living hell / nightmare . doctors think I Need to see a shrink, I believe I need to also . but since when does anxiety
jrrodriguezj735
in
Anxiety Support
9 years ago
Restrictive Lung Disease
I was dianosted with moderate restrictive lung disease about a month ago. I was told over the phone and I don't have a followup appointment with my pulmonologist until next week. I am really having a hard time breathing especially at night. I have a cpap machine but that doesn't seem to help any.
I was dianosted with moderate restrictive lung disease about a month ago. I was told over the phone and I don't have a followup appointment with my pulmonologist until next week. I am really having a hard time breathing especially at night. I have a cpap machine but that doesn't seem to help any.
Photolady
in
Lung Conditions Community Forum
9 years ago
MST continus
Hi I have been to the pain clinic and prescribed 5mg MST continue, has anyone else tried this for fibro. I have tried lyrica gabapentin and Amitryptyline which have not helped. Thanks Tracy.xx
Hi I have been to the pain clinic and prescribed 5mg MST continue, has anyone else tried this for fibro. I have tried lyrica gabapentin and Amitryptyline which have not helped. Thanks Tracy.xx
bvlgari
in
Fibromyalgia Action UK
9 years ago
home sleep study q
In a home sleep test, when they work out results, do they know when the persons awake and asleep and take only the sleep time into consideration when working out if someone needs cpap or such like? I believe I may need cpap or something at night, but that unless only the sleep time is accounted, I
In a home sleep test, when they work out results, do they know when the persons awake and asleep and take only the sleep time into consideration when working out if someone needs cpap or such like? I believe I may need cpap or something at night, but that unless only the sleep time is accounted, I
Hidden
in
Lung Conditions Community Forum
9 years ago
moderate restrictive lung disease
I am 53 and have recently had a mild heart attack and was diagnosed with degenerative disk disease and just found out that I have moderate restrictive lung disease but I don't see the doctor for a couple of weeks. All I know about it is what I read on line and I ended up scaring myself. Do most people
I am 53 and have recently had a mild heart attack and was diagnosed with degenerative disk disease and just found out that I have moderate restrictive lung disease but I don't see the doctor for a couple of weeks. All I know about it is what I read on line and I ended up scaring myself. Do most people
Photolady
in
Lung Conditions Community Forum
9 years ago
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