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People of HU - Neuromyelitis Optica: Ashlee's story
Neuromyelitis optica (NMO), also known as Devic's disease, is a rare condition where the immune system damages the spinal cord and the nerves of the eyes (optic nerves), [i]NHS England.[/i] [i][/i] Today, Ashlee shares with is her story with the disease, hoping to inspire others who may be going through
Neuromyelitis optica (NMO), also known as Devic's disease, is a rare condition where the immune system damages the spinal cord and the nerves of the eyes (optic nerves), [i]NHS England.[/i] [i][/i] Today, Ashlee shares with is her story with the disease, hoping to inspire others who may be going through
SaskiaHU
HealthUnlocked
in
HealthUnlocked Blog
2 years ago
Plasmapheresis / Therapeutic Plasma Exchange, TPE
TPE, with blood withdrawn and reinserted without the plasma, has in a small clinical single-arm trial indicated remarkable benefits in markers of various kinds including DNA damage, cellular senescence and immunity (T-cells, B-cells, NK cells). Downside appears limited. It remains to be seen if the
TPE, with blood withdrawn and reinserted without the plasma, has in a small clinical single-arm trial indicated remarkable benefits in markers of various kinds including DNA damage, cellular senescence and immunity (T-cells, B-cells, NK cells). Downside appears limited. It remains to be seen if the
Purple-Bike
in
Advanced Prostate Cancer
2 years ago
Two PerPLEXing Cases of Hashimoto’s Encephalopathy Unresponsive to Steroid and Intravenous Immunoglobulin Therapy
Many questions arise from this paper. Why did these two patients have such an awful time when we see so many others with seemingly worse test results doing far better? Would plasmapheresis help others - even some who don't actually have Hashimoto’s encephalopathy (so far as we can tell)? What
Many questions arise from this paper. Why did these two patients have such an awful time when we see so many others with seemingly worse test results doing far better? Would plasmapheresis help others - even some who don't actually have Hashimoto’s encephalopathy (so far as we can tell)? What
helvella
Thyroid UK
in
Thyroid UK
2 years ago
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A very happy (and long-overdue) update
I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now! A brief recap: my husband was diagnosed with HSE In June 2021. He was
I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now! A brief recap: my husband was diagnosed with HSE In June 2021. He was
every_cloud
in
Encephalitis International
3 years ago
Plasmapheresis treatments
Just received my 5th treatment. Doc saying not seeing the results they expected. Anyone else have this Tx and can give me idea, how many, when you saw results? Will be discussing options with docs Monday after they discuss…IVIG or another IV tx starts with an R (sorry, brain 🧠🙄). New here, trying
Just received my 5th treatment. Doc saying not seeing the results they expected. Anyone else have this Tx and can give me idea, how many, when you saw results? Will be discussing options with docs Monday after they discuss…IVIG or another IV tx starts with an R (sorry, brain 🧠🙄). New here, trying
Byourownadvocate
in
Hughes Syndrome APS Forum
3 years ago
Any other parents of very young children here? Searching for hope.
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Harper1
in
Encephalitis International
3 years ago
Family History of Hypothyroidism
I have always had vague mild symptoms that may or may not be associated (chronically dry skin, slow tummy, heavy periods etc.) but in the last year I have developed
Melasma
.
I have always had vague mild symptoms that may or may not be associated (chronically dry skin, slow tummy, heavy periods etc.) but in the last year I have developed
Melasma
.
woodlandrose
in
Thyroid UK
3 years ago
Acute kidney injury , worried!!
Hi all, my brother has been found to have thromobotic microangiopathy (on kidney biopsy) secondary to APS and likely complement dysregulation. He is on dialysis and plasma exchange. Doctors are saying the kidney injury is reversible but will take time. Anyone can throw some light on what to expect as
Hi all, my brother has been found to have thromobotic microangiopathy (on kidney biopsy) secondary to APS and likely complement dysregulation. He is on dialysis and plasma exchange. Doctors are saying the kidney injury is reversible but will take time. Anyone can throw some light on what to expect as
Akam
in
Kidney Dialysis
3 years ago
LIVING LIFE AFTER LIFE SUPPORT ...MYASTHENIA GRAVIS GRAVIS CRISIS
I am so grateful and blessed to still live ,life , to have a heartbeat , respiration without assistance ,brainwave activity ,swallowing ,talking , walking ,and having the awesome ability to have heartfelt emotions again . I'm recovering from a MYASTHENIA GRAVIS CRISIS .Respiratory Failure ,accompanied
I am so grateful and blessed to still live ,life , to have a heartbeat , respiration without assistance ,brainwave activity ,swallowing ,talking , walking ,and having the awesome ability to have heartfelt emotions again . I'm recovering from a MYASTHENIA GRAVIS CRISIS .Respiratory Failure ,accompanied
faithhope421
in
Myasthenia Gravis Association
4 years ago
LIVING AFTER LIFE SUPPORT ...MYASTHENIA GRAVIS CRISIS
Hello to everyone , I truly missed you .I am so grateful and blessed to still have life .and to live .To have a heartbeat , respiration without assistance , brainwave activity ,to swallow ,to walk ,to talk ,to have the awesome ability to express heartfelt emotions again .If anyone know what it is like
Hello to everyone , I truly missed you .I am so grateful and blessed to still have life .and to live .To have a heartbeat , respiration without assistance , brainwave activity ,to swallow ,to walk ,to talk ,to have the awesome ability to express heartfelt emotions again .If anyone know what it is like
faithhope421
in
Brain health
4 years ago
Top 10 Series: Antiphospholipid Syndrome and Skin Problems
Top 10 Points Patients Should Know About Skin Findings in Antiphospholipid Syndrome 1. What is antiphospholipid syndrome (APS)? Antiphospholipid syndrome (APS) is a systemic autoimmune disorder in which the patient’s immune system makes antibodies that target their own body cells. These antibodies,
Top 10 Points Patients Should Know About Skin Findings in Antiphospholipid Syndrome 1. What is antiphospholipid syndrome (APS)? Antiphospholipid syndrome (APS) is a systemic autoimmune disorder in which the patient’s immune system makes antibodies that target their own body cells. These antibodies,
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
Why is my Allosure number 2.4 but creatinine 1.4 and biopsy shows no rejection?
Hi. I am one year out, 99% HLAs. It's been a rodeo ride this last year because of my antibodies. This last year I have had 4 Allosure tests and underwent plasmapheresis and Rituxan treatments. The last Allosure shows 2.4 which is a pretty high rejection number. My creatinine has been consistent
Hi. I am one year out, 99% HLAs. It's been a rodeo ride this last year because of my antibodies. This last year I have had 4 Allosure tests and underwent plasmapheresis and Rituxan treatments. The last Allosure shows 2.4 which is a pretty high rejection number. My creatinine has been consistent
Norken
in
Kidney Transplant
4 years ago
Melasma and Endometriosis
Has anyone developed
melasma
(skin discolouration) from the contraceptive pill or as a result of having endometriosis. If so how have you managed to treat this?
Has anyone developed
melasma
(skin discolouration) from the contraceptive pill or as a result of having endometriosis. If so how have you managed to treat this?
Ziyahaze
in
Endometriosis UK
4 years ago
LIVER TRANSPLANT FOR SEVERE ITCHING
HELLO 👋 My University of MI doctor is referring me to see drs at transplant department next month to discuss liver transplant. He stated that my liver is good no chirosis and no scarring. My issue is psoriasis that I have from liver duct bile damage due to PBC. NOTHING tried worked for me including
HELLO 👋 My University of MI doctor is referring me to see drs at transplant department next month to discuss liver transplant. He stated that my liver is good no chirosis and no scarring. My issue is psoriasis that I have from liver duct bile damage due to PBC. NOTHING tried worked for me including
genj65
in
PBC Foundation
4 years ago
Nuerobehcet's
Hello everyone , I have nuerobehcet's one aspect of which I find most difficult to live with is increasing agitation and irritability . My poor husband is also suffering whilst trying not to annoy me . I am so worried about this problem and the way it is having an impact on our relationship . I find
Hello everyone , I have nuerobehcet's one aspect of which I find most difficult to live with is increasing agitation and irritability . My poor husband is also suffering whilst trying not to annoy me . I am so worried about this problem and the way it is having an impact on our relationship . I find
manitou
in
Behçet's UK
4 years ago
Struggling with depression
Hi, I was reccomended this site by a social worker. I'm hoping maybe to find support on here. I'm a 21 year old female, and I've struggled with anxiety pretty much my entire life. About a year ago I was diagnosed with postpartum depression. Soon after, I started getting sick, and on December 3rd, 2019
Hi, I was reccomended this site by a social worker. I'm hoping maybe to find support on here. I'm a 21 year old female, and I've struggled with anxiety pretty much my entire life. About a year ago I was diagnosed with postpartum depression. Soon after, I started getting sick, and on December 3rd, 2019
Kat_21
in
Anxiety and Depression Support
4 years ago
Vestibular problems
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Jmiller623
in
LUPUS UK
4 years ago
Diluting blood plasma rejuvenates tissue, reverses aging in mice
https://medicalxpress.com/news/2020-06-diluting-blood-plasma-rejuvenates-tissue.html "In 2005, University of California, Berkeley, researchers made the surprising discovery that making conjoined twins out of young and old mice—such that they share blood and organs—can rejuvenate tissues and reverse
https://medicalxpress.com/news/2020-06-diluting-blood-plasma-rejuvenates-tissue.html "In 2005, University of California, Berkeley, researchers made the surprising discovery that making conjoined twins out of young and old mice—such that they share blood and organs—can rejuvenate tissues and reverse
Rhyothemis
in
Cure Parkinson's
4 years ago
Headache und Stiffness a sign of relapse?
My 18 years old sun was diagnosed with autoimmune encephalitis from unknown antibody in October 2018. He was getting better very slowly since then after steroids, plasmapheresis and rituximab every six month. He developed a very strong headache two weeks ago, almost after getting up in the mornings,
My 18 years old sun was diagnosed with autoimmune encephalitis from unknown antibody in October 2018. He was getting better very slowly since then after steroids, plasmapheresis and rituximab every six month. He developed a very strong headache two weeks ago, almost after getting up in the mornings,
Marty1234
in
Encephalitis International
4 years ago
Your help is needed
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
John_Mills
Vasculitis UK
in
Vasculitis UK
4 years ago
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