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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
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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
Sickle Cell NewsWeek
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
sicklecellnews
in
Sickle Cell Society
6 years ago
Sickle Cell News Week
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
sicklecellnews
in
Sickle Cell Society
6 years ago
After NHL and BMT
Hi, I’m a caregiver of my husband with NHL ALCL Alk+ and Leptomenges. Took 9 weeks, multiple hospitals and doctors to diagnose summer 2017. He had 5 rounds of CHOEP and then experienced horrible headaches and a seizure which resulted in leptomeneges diagnosis and new course of chemo. After scans with
Hi, I’m a caregiver of my husband with NHL ALCL Alk+ and Leptomenges. Took 9 weeks, multiple hospitals and doctors to diagnose summer 2017. He had 5 rounds of CHOEP and then experienced horrible headaches and a seizure which resulted in leptomeneges diagnosis and new course of chemo. After scans with
Onedayatatime2
in
Non Hodgkin's Lymphoma Friends
6 years ago
Need info on raising red cell count
Hello I have been here on and off for about a year. I know you are all going through your individual health issues and I hope and pray you find the answers you are looking for. I joined because my brother was diagnosed with CLl q11 a little over three years ago. He is 55 years old and had been in great
Hello I have been here on and off for about a year. I know you are all going through your individual health issues and I hope and pray you find the answers you are looking for. I joined because my brother was diagnosed with CLl q11 a little over three years ago. He is 55 years old and had been in great
Lorray
in
CLL Support
6 years ago
SICKLE CELL NEWSWEEK
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
sicklecellnews
in
Sickle Cell Society
6 years ago
cll w/ a twist - Stem cell
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
chemosuxs
in
CLL Support
6 years ago
SICKLE CELL NEWS WEEK
SICKLECELLNEWSWEEK The playful young boy never had a crisis until the family moved to Canada! http://bit.ly/2PYoM2n The Bako Youth Development Foundation has conducted over one million Hb verification tests in Nigeria http://bit.ly/2Pm19Ur Aiden’s sickle cell was worsening … until his concerned
SICKLECELLNEWSWEEK The playful young boy never had a crisis until the family moved to Canada! http://bit.ly/2PYoM2n The Bako Youth Development Foundation has conducted over one million Hb verification tests in Nigeria http://bit.ly/2Pm19Ur Aiden’s sickle cell was worsening … until his concerned
sicklecellnews
in
Sickle Cell Society
6 years ago
I'm new here! This is my Story...
Good evening all, My name is Claire and I am 22 years old. Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why. I had my first ever bone marrow biopsy done just last
Good evening all, My name is Claire and I am 22 years old. Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why. I had my first ever bone marrow biopsy done just last
Actuallyclaire
in
MPN Voice
6 years ago
Hip pain
So Ryan has been through the loop.. about every 30 days since August 23rd when we learned of his brain tumor something new has popped up.. the lung tumor that is 4.7cm and now left hip pain to the point where he can’t walk. Where did this come from? Is this a sign the cancer has spread to his bones?
So Ryan has been through the loop.. about every 30 days since August 23rd when we learned of his brain tumor something new has popped up.. the lung tumor that is 4.7cm and now left hip pain to the point where he can’t walk. Where did this come from? Is this a sign the cancer has spread to his bones?
kellyOd
in
Melanoma Caregivers
6 years ago
side effects
It’s been a long year since I was diagnosed with ET + Jak 2 positive and already fought and battled my way through the side effects of Hydroxy, Anagrelide and Interferon. When I started Pegasys four weeks ago, I thought this may be the one. However I started it and I still had not recovered from the
It’s been a long year since I was diagnosed with ET + Jak 2 positive and already fought and battled my way through the side effects of Hydroxy, Anagrelide and Interferon. When I started Pegasys four weeks ago, I thought this may be the one. However I started it and I still had not recovered from the
MaggieMagpie49
in
MPN Voice
6 years ago
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