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Experiences with
Venous ulcer compression system
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Feeling great with compression
I have had tremendous success with compression socks. I wear regular compression socks during the day and thigh high compression stockings at night. I also take CBD oil, magnesium and other electrolytes, eat low carb diet, and.0625 mg Mirapex. I just started 100 mg Gabapentin...which I may discontinue
I have had tremendous success with compression socks. I wear regular compression socks during the day and thigh high compression stockings at night. I also take CBD oil, magnesium and other electrolytes, eat low carb diet, and.0625 mg Mirapex. I just started 100 mg Gabapentin...which I may discontinue
Hidden
in
Restless Legs Syndrome
6 years ago
Ulcers ulcers ulcers
Bloody ulcers. Back of my nose, back of my mouth and in my throat. So sore, so painful. Tried difflam already and now some throat lozenges. Still sore. Hurts to swallow. Even just naturally without drinking. Miserable. Tell me something about your day. Thanks C
Bloody ulcers. Back of my nose, back of my mouth and in my throat. So sore, so painful. Tried difflam already and now some throat lozenges. Still sore. Hurts to swallow. Even just naturally without drinking. Miserable. Tell me something about your day. Thanks C
Papapickle
in
Behçet's UK
6 years ago
Stem cell transplant appointment for post PV MF
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
tracey13
in
MPN Voice
6 years ago
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Sickle Cell News
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
sicklecellnews
in
Sickle Cell Society
6 years ago
Anyone tried baking soda mouth rinse to relieve pain from BD mouth ulcer flares?
I've heard of rinsing with baking soda before but never used it. I get particularly sore ulcers on the very tip of the tongue, which impacts my ability to eat, drink, and speak. Appreciate any tips from people who've used a baking soda mixture, or indeed anything else they've found to work!
I've heard of rinsing with baking soda before but never used it. I get particularly sore ulcers on the very tip of the tongue, which impacts my ability to eat, drink, and speak. Appreciate any tips from people who've used a baking soda mixture, or indeed anything else they've found to work!
Dub123
in
Behçet's UK
6 years ago
New in fight with ALD
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
MonaStoica
in
Leukodystrophy Support
6 years ago
White tongue
Hi I am on Humira and Metoject. 2 weeks ago I'd the flu jab ever since my IBS is bad and my mouth is covered inside my lips with cold sores, so I looked inside and to my horror my tongue was heavily coated in yellowy white and mouth ulcers. Rheumy nurse said buy nysatin but does it work and what will
Hi I am on Humira and Metoject. 2 weeks ago I'd the flu jab ever since my IBS is bad and my mouth is covered inside my lips with cold sores, so I looked inside and to my horror my tongue was heavily coated in yellowy white and mouth ulcers. Rheumy nurse said buy nysatin but does it work and what will
IV-cross
in
NRAS
6 years ago
Sore mouth
Can anyone who’s had mouth ulcers tell me how long they last, I’ve had them about 10 days and don’t seem to be getting any better, I’ve been using difflam 3 times a day. Only got them after the 5th chemo of carbo/caylex
Can anyone who’s had mouth ulcers tell me how long they last, I’ve had them about 10 days and don’t seem to be getting any better, I’ve been using difflam 3 times a day. Only got them after the 5th chemo of carbo/caylex
Elfed
in
My Ovacome
6 years ago
Bone Marrow Transplant Failed
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
Beauxman
in
Advanced Prostate Cancer
6 years ago
Dr Manos Nikolousis discusses new drugs now available to treat Acute Myeloid Leukaemia (AML)
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Standards of Care as defined by UMN doctors
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
fightald
Administrator
in
Parents of ALD Newborns
6 years ago
mouth ulcers
I've been on Carbimazole for about 2 months, I have definitely noticed an improvement in my over all symptoms and my last blood test showed progress although I'm not in normal range yet. One thing that is damaging me greatly is I'm having really bad mouth ulcers. I've always had issues with them but
I've been on Carbimazole for about 2 months, I have definitely noticed an improvement in my over all symptoms and my last blood test showed progress although I'm not in normal range yet. One thing that is damaging me greatly is I'm having really bad mouth ulcers. I've always had issues with them but
ed2w
in
Thyroid UK
6 years ago
Has anyone had a bone marrow transplant who has PV?
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
tracey13
in
MPN Voice
6 years ago
two kids diagnosed with ALD
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
aadilmadarveet
in
Leukodystrophy Support
6 years ago
Identify the carrier.
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
aadilmadarveet
in
Parents of ALD Newborns
6 years ago
Lukiemia and High white blood count
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
ConcernedSpouse2012
in
CLL Support
6 years ago
Any help in Florida?
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Susanissufferingtoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
What a year - and some good news to end it
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Timjonze
in
MPN Voice
6 years ago
Mouth ulcers
Hey all, I have been a bit under the weather recently nothing serious but equally nothing I could put my finger on either. However, this week I have come down with a nasty cold (don’t usually get colds) which has knocked me for a six and I seem to be getting mouth ulcers. I’m on the methotrexate injection
Hey all, I have been a bit under the weather recently nothing serious but equally nothing I could put my finger on either. However, this week I have come down with a nasty cold (don’t usually get colds) which has knocked me for a six and I seem to be getting mouth ulcers. I’m on the methotrexate injection
Damamy
in
NRAS
6 years ago
It's back.
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
CynD
in
My Ovacome
6 years ago
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