Experiences with

Alna

I’ve suffered from knee, bilateral hip, and ankle pain for a few years. Lately the hip pain radiates laterally down my leg to my ankles. Sometimes it takes me a few to be able to walk when I wake up. I have had the full Lupus Work up by labs. A year ago. I have positive ANA and 2/3 positive Anticardiolipin

I have tested positive for ANA and ds-DNA several times but always negative for ENA through NHS. I paid for a private blood test that gave me a titre 1:320 and speckled pattern but my rheumatologist refuses to see me again after fibromyalgia diagnosis. This year I paid to be seen by a private dermatologist

so I went to the rheumatologist today. after explaining aches , skin changes , other little symptoms like putting edema , headaches and such .. he does a physical exam on my , looks at hyper mobility but tells me I don’t meet criteria for fibromyalgia… which I didn’t think I would anyways lol. examines

Well, yesterday’s visit didn’t go as expected. My GP seems to think my positive ANA & positive AMA relate to 2 separate issues. So I’ve been referred to rheumatology for my ANA, (lupus) now also gastroenterologist for my AMA (liver). On top of that I now wear a 24 hr BP monitor as my blood pressure was

Good Morning all, Hope you are all well. I am currently experiencing Sjögren symptoms, Dry eyes ,nasal passage , mouth and other areas, outside of eyes skin very dry,cracked and sore. I went to the optician who said my eyes were very dry and advised drops and heat packs, also to go to Dr for diagnosis

Hi, I am new here and a little anxious posting. I am desperate and wondering if anyone has ever gone private in the UK and if so if anyone could recommend any good rheumatologists? I feel I have run out of options and private is the only way forward. I just feel so depleted and upset. To give some

Hi all - I posted this on NRAS website and loads of helpful replies. As lupus is part of my diagnosis I thought I would post here too: Oh where to start. Feet have been bad for a few years. Reached crisis point a few weeks ago. Agreed with GP after asking about crutches to take short course of steroids

Oh where to start. Feet have been bad for a few years. Reached crisis point a few weeks ago. Agreed with GP after asking about crutches to take short course of steroids as instructed by rheumatology. They worked within a day. Had rheumatology appointment, referred to cMATS again, appointment tomorrow

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms. Was seen by Rheumatology in January 2024 where I was misdiagnosed with Fibromyalgia a condition I don’t have as I have never had widespread pain or tender points, told to take amitriptyline and

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms. Was seen by Rheumatology in January 2024 where I was misdiagnosed with Fibromyalgia a condition I don’t have as I have never had widespread pain or tender points, told to take amitriptyline and

I've been reading the forum for several months now, having been chronically ill since Easter. My story - I have been prescribed thyroxine for 25 years and have been mostly very stable. I have previously tested positive for antibodies so I assumed it was Hashis. Last Sept I suffered shingles, close unexpected

11 weeks ago my Levothyroxine (Teva) was increased a tiny bit from 100 to 125 on alternate days.Latest results TSH 0.11 (0.27-4.2) T3 1.0 (3.1-4.2) T4 23 (12-22) I've reduced again to 100mcg as of a few days ago. They'll retest again in a couple of months. I have a telephone appt with a GP on the

Hi everyone, I was just wondering if anyone has been seen at the Fever Clinic of the Royal Free Hospital. After having problems with low-grade fevers, mouth ulcers, eczema-like rashes, extreme fatigue, sore throat, lightheadedness and stomach issues on and off for 2 years now, I was referred to Infectious

Recent GP visit with a mouth full of ulcers brought long standing health issues to a head. I have a long history of health issues since contracting mononucleosis in 1987. Fatigue, dizziness, headaches, migraines, Endometriosis, sleep disorder - hypnogogic hallucinations, sun allergy that began as a rash

Hi everybody, I'm Ciaran & I have been very recently diagnosed Polycythaemia Vera. As you're probably aware, the early stages of research are quite daunting &, whilst my haematologist is recommending Hydroxycarbamide or Peginterferon alfa 2a to rapidly reduce my platelet count & get my high stats under

I've committed the cardinal sin and entrusted Dr Google to diagnose me leading to feeling pretty distraught about the future, or lack of it... I've developed puffy fingers in the last few months, pretty much always brought on by activities - DIY, weeding in the garden. They don't tend to become puffy

   “Our results suggest that a higher initiating-dose regimen, with the flexibility of dose schedule adjustment from biweekly to monthly, i.e., once every 3-5 weeks, after the CHR is stabilized with 1 year of ropeg treatment is associated with a high chance of neoplastic cell clearance and robust clinical

Hello I have a newbie’s question about diagnosis, please. Do you need to be experiencing symptoms such as visible butterfly rash and red/swollen joints at the time you see the rheumatologist for a diagnosis? Or can/will they go from photos and history? I’ve had symptoms that could be SLE for several

Due to my ongoing failing health I've had to do my own research as to the pathway of blood test results, symptoms and the progression/knock on effects of having doctors who refuse to help. I have had to be extremely proactive in my own diagnosis, following the path of autoimmune conditions (co-morbid

Hello everyone, I am new to this forum, and I am looking for any insights and answers as I feel I am constantly hitting a brick wall with getting any type of answer. I am a 34 year old female (caucasian), I am 5'4 and 12.7 stone- I could probably do with losing 2 stone but I am not significantly '