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Diagnosed with PV but normal RBC count
Recently diagnosed with PV (JAK2+) however my blood counts are quite a bit different to others that I see posting here. My RBC count has been normal for as long as I can see (in fact towards the low end of the normal range), however its my WBC count that is high. My platelets are high but just at the
Recently diagnosed with PV (JAK2+) however my blood counts are quite a bit different to others that I see posting here. My RBC count has been normal for as long as I can see (in fact towards the low end of the normal range), however its my WBC count that is high. My platelets are high but just at the
Fuzzy_Duck
in
MPN Voice
5 years ago
Dry Eye and Sjögren’s Syndrom
It is estimated that more than 330 million people currently suffer from Dry Eye Syndrome worldwide. Although often misunderstood, the complex disease can even lead to a chronic vision threatening disorder, conjunctivochalasis (CCh). Certain modern day conveniences are thought to be a cause in the increase
It is estimated that more than 330 million people currently suffer from Dry Eye Syndrome worldwide. Although often misunderstood, the complex disease can even lead to a chronic vision threatening disorder, conjunctivochalasis (CCh). Certain modern day conveniences are thought to be a cause in the increase
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
Hydroxychlorquine alternative
Hi all, has anyone had to come off Hydroxychlorquine and if so what alternative was offered? I’ve got Sjögren’s, Lupus and RA with lung disease and on Hydroxychlorquine and Mycophenolate plus steroids but have been told by Rheumy nurse to stop Hydroxy due to macular degeneration disease started in my
Hi all, has anyone had to come off Hydroxychlorquine and if so what alternative was offered? I’ve got Sjögren’s, Lupus and RA with lung disease and on Hydroxychlorquine and Mycophenolate plus steroids but have been told by Rheumy nurse to stop Hydroxy due to macular degeneration disease started in my
Barbs51
in
LUPUS UK
5 years ago
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W8R3 - Running while drunk
Well that made for an interesting experience. Despite being up all night working the nightshift, I still managed to get my sleepy self around the Plymvalley Parkrun for my third parkrun. My head was definitely in bed asleep as I felt like a disoriented zombie. My feet plodding on, one foot infront of
Well that made for an interesting experience. Despite being up all night working the nightshift, I still managed to get my sleepy self around the Plymvalley Parkrun for my third parkrun. My head was definitely in bed asleep as I felt like a disoriented zombie. My feet plodding on, one foot infront of
Bike_and_Run
Graduate
in
Couch to 5K
5 years ago
Jay 20 Experiences the Autumn Fall!
Hi everyone. I previously wrote to say how great I thought the Viviscal pills were. Well for a time they really seemed to be helping. I am just writing in to say alas my lovely thick hair is yet again starting to fall out and in quite big chunks. My scalp recently became very dry and itchy which has
Hi everyone. I previously wrote to say how great I thought the Viviscal pills were. Well for a time they really seemed to be helping. I am just writing in to say alas my lovely thick hair is yet again starting to fall out and in quite big chunks. My scalp recently became very dry and itchy which has
Jay2O
in
Alopecia UK
5 years ago
Dental extraction and prolia
I need to have an extraction and my last prolia injection was November 2018. My dentist has given me the name of a oral surgeon as he doesn't want to take the risk of my jaw not healing. Has anyone had this type of Surgery.
I need to have an extraction and my last prolia injection was November 2018. My dentist has given me the name of a oral surgeon as he doesn't want to take the risk of my jaw not healing. Has anyone had this type of Surgery.
Angels-delight
in
NRAS
5 years ago
Aneurysm repair side effects
I had an unruptured, 28mm ,wide necked Annie coiled and stented in June 2018 . Since then I’ve had to learn to walk , bathe and dress myself which I have managed to do although I can only walk with a walker. My main problem is that my face is still numb , loss of vision , my eye doesn’t close properly
I had an unruptured, 28mm ,wide necked Annie coiled and stented in June 2018 . Since then I’ve had to learn to walk , bathe and dress myself which I have managed to do although I can only walk with a walker. My main problem is that my face is still numb , loss of vision , my eye doesn’t close properly
Shon48
in
Headway
5 years ago
How long after stopping injections do symptoms return?
Sorry I've been such a pest lately, but I'm sort of at a precipice here. Per my other recent posts, I have temporarily stopped injections in attempting to diagnose my B12D (for the last 57 days). This morning, my right two middle fingers were more numb than usual and my "MS Hug" was gripping me from
Sorry I've been such a pest lately, but I'm sort of at a precipice here. Per my other recent posts, I have temporarily stopped injections in attempting to diagnose my B12D (for the last 57 days). This morning, my right two middle fingers were more numb than usual and my "MS Hug" was gripping me from
AirAl
in
Pernicious Anaemia Society
5 years ago
Collagen
Has anyone ever heard of taking a collagen supplement to help PMR. Talking to someone today who has an autoimmune disorder but they have not figured out exactly what it is. Her daughter also has an autoimmune thyroid she said. They are both taking collagen in powder form and are feeling better.
Has anyone ever heard of taking a collagen supplement to help PMR. Talking to someone today who has an autoimmune disorder but they have not figured out exactly what it is. Her daughter also has an autoimmune thyroid she said. They are both taking collagen in powder form and are feeling better.
Robinsnest72
in
PMRGCAuk
5 years ago
Losing Vision!
Unable to read, decrease in vision, told scarring under eyelidsand is scleroderma of eyes, started on serum tears, prednisone and diflucan. So scared and how will this go??
Unable to read, decrease in vision, told scarring under eyelidsand is scleroderma of eyes, started on serum tears, prednisone and diflucan. So scared and how will this go??
Shejustice
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
I am probably not unique.
I have not posted for some time so I thought I would again to bring my different theories to the attention of new people. Some who have read my posts know I think a big influence on AF is the nerve communication between the brain and the heart. The pathway, the spine, must be un-compromised for correct
I have not posted for some time so I thought I would again to bring my different theories to the attention of new people. Some who have read my posts know I think a big influence on AF is the nerve communication between the brain and the heart. The pathway, the spine, must be un-compromised for correct
EngMac
in
AF Association
5 years ago
Need more information from people with same problems.
Hi I would like to know if anyone has been diagnosed with BRVO with macular edema. I have been treated with avastin,ozurdex,and now Eyelea for 6 years. My central vision is gone in the treated eye. Vision is just finger counting. My saving grace is my 20/20 good eye. I was starting to get the injections
Hi I would like to know if anyone has been diagnosed with BRVO with macular edema. I have been treated with avastin,ozurdex,and now Eyelea for 6 years. My central vision is gone in the treated eye. Vision is just finger counting. My saving grace is my 20/20 good eye. I was starting to get the injections
Codeblack7
in
Macular Society
5 years ago
Swollen red eyes
Woke up this morning with a red swollen eye... now early evening the other eye is the same. Red and sore and puffy at the top of my cheeks ... anyone had this ? I’ve been diagnosed with Fibromyalgia and also Hypothyroidism
Woke up this morning with a red swollen eye... now early evening the other eye is the same. Red and sore and puffy at the top of my cheeks ... anyone had this ? I’ve been diagnosed with Fibromyalgia and also Hypothyroidism
Ladybex
in
Fibromyalgia Action UK
5 years ago
Steroids for the rest of my life?
Re. GCA. Has anyone here been told that they will have to remain on a low dose of steroids for the rest of their life because their GCA reoccurred? The rheumatologist said that because it had returned, there was a chance it could reoccur again and to rule out the chance of blindness, it would be best
Re. GCA. Has anyone here been told that they will have to remain on a low dose of steroids for the rest of their life because their GCA reoccurred? The rheumatologist said that because it had returned, there was a chance it could reoccur again and to rule out the chance of blindness, it would be best
LindaKent
in
PMRGCAuk
5 years ago
Starting phase 2 trial : Terazosin for Parkinson's Disease (TZ-PD)
Things are moving fast. A Phase II clinical trial for Terazosin in Parkinsons is already being organised. Double blind, placebo controlled,12 weeks treatment in 20 people with PD (1:1 randomisation). Safety is primary outcome, reporting early 2020: https://clinicaltrials.gov/ct2/show/NCT03905811
Things are moving fast. A Phase II clinical trial for Terazosin in Parkinsons is already being organised. Double blind, placebo controlled,12 weeks treatment in 20 people with PD (1:1 randomisation). Safety is primary outcome, reporting early 2020: https://clinicaltrials.gov/ct2/show/NCT03905811
Farooqji
in
Cure Parkinson's
5 years ago
High myopia
Hi everyone, I am curious to know how many of you, who are high myopes developped macular degeneration later in life? I am 33 and have high myopia (-11D) and according to the doctors that I've been to, a "normal" retina for someone with these diopters...i know it is pointless to worry for something that
Hi everyone, I am curious to know how many of you, who are high myopes developped macular degeneration later in life? I am 33 and have high myopia (-11D) and according to the doctors that I've been to, a "normal" retina for someone with these diopters...i know it is pointless to worry for something that
Smurfy1986
in
Macular Society
5 years ago
Steroid Injections
Morning can I ask how long steroid injections take to kick in to relive pelvic pains. I had the following procedure done last Thursday but still feel pain on my left leg. Bilateral pulsed radiofrequency to the bilateral genitofemoral nerve with Local Anaesthetic and steroid, Trigger point injections
Morning can I ask how long steroid injections take to kick in to relive pelvic pains. I had the following procedure done last Thursday but still feel pain on my left leg. Bilateral pulsed radiofrequency to the bilateral genitofemoral nerve with Local Anaesthetic and steroid, Trigger point injections
Yas45
in
Pelvic Pain Support Network
5 years ago
update
So I went to my urgent ophthalmologist appointment. I was taken a bunch of pics and stuff. He said my nerves looked healthy and that my cup was just a little bigger than others, but no need for concern right now. He said my floaters are normal too. He will check again in 6 months because I am still a
So I went to my urgent ophthalmologist appointment. I was taken a bunch of pics and stuff. He said my nerves looked healthy and that my cup was just a little bigger than others, but no need for concern right now. He said my floaters are normal too. He will check again in 6 months because I am still a
janeths466
in
Anxiety Support
5 years ago
VISUAL DISTURBANCES OR IRREGULARITIES ??
Hi Everyone, i have put a couple of posts up recently about developing numerous symptoms about 12 weeks ago, i have been taking Levothyroxine for 20 years, the last 10yrs i have been on a daily dose of 150mcg and remained solely on Actavis Brand, anyway without covering old ground
Hi Everyone, i have put a couple of posts up recently about developing numerous symptoms about 12 weeks ago, i have been taking Levothyroxine for 20 years, the last 10yrs i have been on a daily dose of 150mcg and remained solely on Actavis Brand, anyway without covering old ground
SPD1
in
Thyroid UK
5 years ago
Vitreous gel leaking Dr says
Hi my dear friends on Macular, my Eyelea injections have been successful for the past 9 months as long as my injections are prompt every 4 weeks on my bad eye, then bi-monthly on my left, I have noticed that sun light or electric lights are effecting me more, and give me an instant head pain. 2 days
Hi my dear friends on Macular, my Eyelea injections have been successful for the past 9 months as long as my injections are prompt every 4 weeks on my bad eye, then bi-monthly on my left, I have noticed that sun light or electric lights are effecting me more, and give me an instant head pain. 2 days
Annsandra13
in
Macular Society
5 years ago
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