Experiences with

Cavernous sinus thrombosis

good morning, just to let use know I had my liver scan and got results early, so was told am now compensated from decompensated which is great and apperently have been for months because am not yellow and ascites have gone 🤷‍♀️ meld score down to 12, so all is good news, am done with google I honestly

Hi everyone, I'm hoping someone can shed some light on this weird symptom! For almost 10 years now I have had pain in my outer calf about two inches up from my ankle on both sides. It comes on with the slightest exertion but is not there all the time. The achy pain builds and builds until I feel like

Background: The goal of therapy of polycythemia vera (PV) and essential thrombocythemia (ET) is primarily to prevent vascular events that are the leading cause of morbidity and mortality. Patients older than 60 years or with a previous history of thrombotic complications are considered at high

Hello Since the start of my husband's cirrhosis journey last August, with a variceal bleed, his platelets went as low as 2700. Since then they rose to 6000 at one point and are now back down to 5000. I thought they would have gone much more by now but he is also on blood thinners because he has portal

Hi again. Yesterday I asked my GP if I could have my blood immunoglobulin levels checked as I like to keep a handle on those parameters which can indicate the status of my immune system. To be honest, I thought this would be done without question and routinely. However, my doc prefers that my CLL haematologist

Hi me again. I had a normal ultrasound which detected a possible liver hemangioma. The hospital are sending me for a contrast ultrasound to confirm. Online it looks like an MRI is the usual way to confirm this. Is a contrast dye ultrasound as effective? Thanks.

Good evening. New here. Husband in hospital with liver cirrhosis. Having scope on Monday and we were told today that he has portal vein thrombosis. I understand what that is but I’m confused after doing some research as to the difference between portal vein thrombosis and portal vein hypertension? Or

I had an ultrasound today as my ALT levels have been elevated for the past month. The radiographer said she wants to send me for a contrast scan because it looks like I have a liver hemangioma just over 2cm in size. I asked if she thinks it’s cancer, she said she obviously can’t for certain rule this

In feb I had a chest infection and sinusitis I had antibiotics for the sinusitis but not the chest infection anyway since then I’ve had this cough where I’m nearly sick I’ve pulled muscles the lot. It’s a non productive cough and sounds like I’m barking. I visited the doctor and they’ve prescribed a

Conclusion « The knowledge of the JAK2V617F mutation in relation to PV has allowed both physicians and patients to understand that risk is not inherently based on blood counts alone but also due to the effects of JAK2V617F VAF on thrombosis and disease progression. Prospective trials are now highlighting

Does anyone have any experience of having a spleen embolisation? If so, did their spleen carry on necrosis 5 months later? Has anyone had a drain for 5 months outputting necrosing puss? How long were they in hospital for? My bother has PV and portal vein thrombosis and was directed to have radical

Since diagnosis 3 years ago, while on W&W, I have had presume purpura spots come and go on my left arm, but today, after reaching in to tomato cages to capture the best and presumably scraping my arm, I have developed a whole big area of what I assume to be purpura, spread over about 3 inches and not

Hello, Does anyone have any experience of why anyone with Polycythemia Vera and Portal Vein Thrombosis, with a 22cm spleen would be offered a partial splenectomy, a spleen embolisation through the groin? Has anyone been through this? My 48 year old brother went through this on 3rd April 2023 and

 https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002 « Survival and Prognosis Median survival is ⁓15 years but exceeds 35 years for patients aged ≤40 years. Risk factors for survival include older age, leukocytosis, abnormal karyotype, and the presence of adverse mutations. Twenty-year risk

From our friends ay MyMPNTeam. The interview with Dr. Kuykendall is informative and easily understood. There is an article based on the interview too. [i]“This association between high platelets and thrombotic events has been looked at in a variety of fashions over the past 50 years now, and really

I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?

Hi , happy Easter to the CLL community Can anyone offer any advise on the chances of TLS and neutropenic sepsis with V and O treatment? Are they rare or common with this treatment and how serious can they be? my consultant seems to think I am low risk for the TLS, but the sepsis seems to be bigger

(By the way, I am not Asthmetic, but this forum seemed the most relevant place to make this post...) I have Chronic Sinusitis, without Nasal-Polyps. This diagnosis came after having a CT-sinus scan earlier this year. I was told from the CT that it is ‘Mild’ Sinusitis (which sounds about right

Hi all, I have a video PIP assessment in a few weeks time and was wondering if anyone had any tips or advice for this? I do not have issues with mobility but suffer with chronic fatigue and pain due to my illness and am signed off work for the foreseeable. Waiting for a multi organ transplant. It

Is there such a thing as a thrombosis score? I see it mentioned in the odd article? If so what affects this risk. I have a follow up appointment next week. At the moment I am on watch and wait for primary MF intermediate 1, with mutations JAK 2, 32% and DNMT3A 20%. Abnormaility in chromosome 9 and