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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 profile image
every_cloud
in Encephalitis Society

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 profile image
Byourownadvocate
in Hughes Syndrome APS Forum

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 profile image
Harper1
in Encephalitis Society
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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 profile image
Akam
in Kidney Dialysis

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 profile image
faithhope421
in Myasthenia Gravis Association

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 profile image
faithhope421
in Brain health

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 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

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 profile image
Norken
in Kidney Transplant

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 profile image
genj65
in PBC Foundation

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 profile image
manitou
in Behçet's UK

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 profile image
Kat_21
in Anxiety and Depression Support

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 profile image
Jmiller623
in LUPUS UK

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 profile image
Rhyothemis
in Cure Parkinson's

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 profile image
Marty1234
in Encephalitis Society

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 profile image
John_Mills
Vasculitis UKin Vasculitis UK

Argon Plasma Coagulation

I've been asked to go in for a APC in the next few weeks, Dad anyone has this procedure before? What is it for? What is it like and it work? Thanks to anyone who replies. Bob
I've been asked to go in for a APC in the next few weeks, Dad anyone has this procedure before? What is it for? What is it like and it work? Thanks to anyone who replies. Bob
pip-lit profile image
pip-lit
in British Liver Trust

Hughes Syndrome - December 2019

Hughes Syndrome - December 2019 December 6 saw a second London Bridge terrorist attack, the first in Borough Market, the second on the other end of the bridge – both within a couple of hundred yards of our hospital, both with slashing knives. It is poignant to reflect on the long and colourful history
Hughes Syndrome - December 2019 December 6 saw a second London Bridge terrorist attack, the first in Borough Market, the second on the other end of the bridge – both within a couple of hundred yards of our hospital, both with slashing knives. It is poignant to reflect on the long and colourful history
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Plasmapheresis not helping

Hello all just following up on here as I'm in tears not only due this being the day my sister transitioned in 2104 just 3 months after my mommy but I'm miserable from this itching and I mean terrible itching especially at night my feet, legs, hands, eyes and even head! I can't believe that none if the
Hello all just following up on here as I'm in tears not only due this being the day my sister transitioned in 2104 just 3 months after my mommy but I'm miserable from this itching and I mean terrible itching especially at night my feet, legs, hands, eyes and even head! I can't believe that none if the
genj65 profile image
genj65
in PBC Foundation

Transplant 26/10/19

Sorry this post has taken so long......A very special belated birthday gift for my precious donor. My birthday was on 15/10/ and I could not have wished for a better more precious gift, one I intend to treasure and look after for the donor for the rest of my days. Hi all, as the title says, sorry for
Sorry this post has taken so long......A very special belated birthday gift for my precious donor. My birthday was on 15/10/ and I could not have wished for a better more precious gift, one I intend to treasure and look after for the donor for the rest of my days. Hi all, as the title says, sorry for
Bbsmom profile image
Bbsmom
in British Liver Trust

Plasmapheresis for itching

I AM NERVOUS HAVING PLASMAPHERESIS THIS FRODAY AT NOON 😬 HAS ANYONE ELSE HAD THIS PROCEDURE DONE. I AM BEING REFERRED BY MY UNIVERSITY OF MICHIGAN HEPATOLGIST DUE TO MY SEVERE ITCHING FROM PBC AS THEYVE TRIED PRESCRIBING SEVERAL MEDICATIONS, CREAMS ETC.. NOTHING WORK SO CROSSINGS MY FINGERS AS I HAVE
I AM NERVOUS HAVING PLASMAPHERESIS THIS FRODAY AT NOON 😬 HAS ANYONE ELSE HAD THIS PROCEDURE DONE. I AM BEING REFERRED BY MY UNIVERSITY OF MICHIGAN HEPATOLGIST DUE TO MY SEVERE ITCHING FROM PBC AS THEYVE TRIED PRESCRIBING SEVERAL MEDICATIONS, CREAMS ETC.. NOTHING WORK SO CROSSINGS MY FINGERS AS I HAVE
genj65 profile image
genj65
in PBC Foundation
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