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Charles Bonnet Syndrome
Yet another fascinating webinar( last Thursday 3 rd November) about this syndrome.This is usually repeated on You Tube in a few weeks. It may effect anyone with usually at least 60% sight loss. However it does not effect everyone, and some research is ongoing in the UK to determine the cause. Apparently
Yet another fascinating webinar( last Thursday 3 rd November) about this syndrome.This is usually repeated on You Tube in a few weeks. It may effect anyone with usually at least 60% sight loss. However it does not effect everyone, and some research is ongoing in the UK to determine the cause. Apparently
muddledme
in
Glaucoma UK
2 years ago
DRY EYES
Just an update on my dry eye situation. Optician recommended Hycosan night gel and drops during the day. The gel has certainly relieved my gritty eyes, thank goodness. But still have the problem. Went to hospital last week, am now down to 8mg steroids a day from the initial 40g. Consultant pleased and
Just an update on my dry eye situation. Optician recommended Hycosan night gel and drops during the day. The gel has certainly relieved my gritty eyes, thank goodness. But still have the problem. Went to hospital last week, am now down to 8mg steroids a day from the initial 40g. Consultant pleased and
Richmond162
in
PMRGCAuk
2 years ago
Update on breathlessness
Having ruled out any immediate issues with my heart, lung function tests have been done now. The results were sent to Aberdeen and I have had a chest x-ray and am waiting for the feedback. The Chest Clinic in Aberdeen want to see me for more detailed tests and have referred me for a CT scan. There is
Having ruled out any immediate issues with my heart, lung function tests have been done now. The results were sent to Aberdeen and I have had a chest x-ray and am waiting for the feedback. The Chest Clinic in Aberdeen want to see me for more detailed tests and have referred me for a CT scan. There is
Scottishlad
in
NRAS
1 year ago
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How long does a diagnosis take ? Help in Limbo
Hi, I have been feeling unwell for ages lots of different symptoms,eventually a nurse practioner ordered blood test and they came back positive for antinuclear antibodies centromere >8 in July 2022. I was referred to Rheumatologist who as in turn referred me for several test, Ultrasound hands- no
Hi, I have been feeling unwell for ages lots of different symptoms,eventually a nurse practioner ordered blood test and they came back positive for antinuclear antibodies centromere >8 in July 2022. I was referred to Rheumatologist who as in turn referred me for several test, Ultrasound hands- no
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Besremi has (No?) Preservative
This is info is just for curious types, nothing of concern or worry for us Bes users. -Most injectables have some means for preserving. Refrigerating is a 1st line of defense. For Besremi there is confusing info on whether and what type of preservative beyond keeping it cold Besremi uses. In the
This is info is just for curious types, nothing of concern or worry for us Bes users. -Most injectables have some means for preserving. Refrigerating is a 1st line of defense. For Besremi there is confusing info on whether and what type of preservative beyond keeping it cold Besremi uses. In the
EPguy
in
MPN Voice
2 years ago
SLT Failed
The SLT’s I had 8 weeks ago failed to provide any drop in IOP for either eye. To say I was disappointed is an understatement. But I am glad I tried. After suffering through red, sore, weepy eyes for 8 months, I finally said no more! I was ready for aibCanaloplasty or some other MIGS. My Doc convinced
The SLT’s I had 8 weeks ago failed to provide any drop in IOP for either eye. To say I was disappointed is an understatement. But I am glad I tried. After suffering through red, sore, weepy eyes for 8 months, I finally said no more! I was ready for aibCanaloplasty or some other MIGS. My Doc convinced
Floaters
in
Glaucoma UK
2 years ago
Metformin, Myo inositol and letrozole..
Can all of these be taken at the same time? I have pcos. Thank you.
Can all of these be taken at the same time? I have pcos. Thank you.
carebirmingham
in
Fertility Network UK
2 years ago
eye problems with Scleroderma
I was diagnosed with diffuse cutaneous scleroderma in 2018. Currently no treatment but I suffer with dry eyes which have become worse over the last few weeks very itchy and feel tender over the eye ball and eye lids also have dull headache over frontal area above eyes. Anyone have any suggestions? I’
I was diagnosed with diffuse cutaneous scleroderma in 2018. Currently no treatment but I suffer with dry eyes which have become worse over the last few weeks very itchy and feel tender over the eye ball and eye lids also have dull headache over frontal area above eyes. Anyone have any suggestions? I’
Sowze
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Pegasys dosage question
I have ET and am Jak 2 positive. I was on hydroxyurea for two years, but the last six months were difficult because I was extremely nauseous and tired. I am extremely light weight to medication‘s effects and so was on hydroxy once every three days before it became too much for me. I switched to Pegasys
I have ET and am Jak 2 positive. I was on hydroxyurea for two years, but the last six months were difficult because I was extremely nauseous and tired. I am extremely light weight to medication‘s effects and so was on hydroxy once every three days before it became too much for me. I switched to Pegasys
Island-Lady
in
MPN Voice
2 years ago
Confused about pressure and trabs
I had SLT in August. I was told to continue taking Latanoprost/Timolol. When I went to the follow-up 6 weeks later, the pressure was down to 18 L and 24 R from 28 and 34, and the doctor was quite pleased. I had to continue with the eyedrops and come back after 8 weeks . In the meantime I had an appointment
I had SLT in August. I was told to continue taking Latanoprost/Timolol. When I went to the follow-up 6 weeks later, the pressure was down to 18 L and 24 R from 28 and 34, and the doctor was quite pleased. I had to continue with the eyedrops and come back after 8 weeks . In the meantime I had an appointment
BlueMarina
in
Glaucoma UK
2 years ago
Wind-eze problems
Hi all Hope you all had a good pain and sprout free Christmas Reading some feeds today I see there is a problem with Wind-eze supply, a couple of weeks ago a GP recommended an over the counter/ shop floor product called COLPERMIN IBS RELIEF it’s basically Peppermint oil capsules, I’ve tried it a couple
Hi all Hope you all had a good pain and sprout free Christmas Reading some feeds today I see there is a problem with Wind-eze supply, a couple of weeks ago a GP recommended an over the counter/ shop floor product called COLPERMIN IBS RELIEF it’s basically Peppermint oil capsules, I’ve tried it a couple
Jaluga
in
IBS Network
1 year ago
Retinal Bleed
My daughter had a retinal bleed 3 weeks ago. She has myopic degeneration in both eyes. Her central vision is gone in effected eye. She is seeing a black spot in that area. Treated with Avastin 3 days post incident and is due another shot in November. She had a previous bleed in 2018. However I suspect
My daughter had a retinal bleed 3 weeks ago. She has myopic degeneration in both eyes. Her central vision is gone in effected eye. She is seeing a black spot in that area. Treated with Avastin 3 days post incident and is due another shot in November. She had a previous bleed in 2018. However I suspect
Faith8867
in
Macular Society
2 years ago
Simbrinza eye drops
We have contacted Novartis pharmaceutical corporation for an update about the supply difficulty with obtaining Simbrinza eye drops. In a verbal message, they said: “There is an interruption in the supply of Simbrinza eye drops. There is no confirmed date of when it is likely to be made available again
We have contacted Novartis pharmaceutical corporation for an update about the supply difficulty with obtaining Simbrinza eye drops. In a verbal message, they said: “There is an interruption in the supply of Simbrinza eye drops. There is no confirmed date of when it is likely to be made available again
TomS_GlaucomaUK
Administrator
in
Glaucoma UK
2 years ago
OCD therapy
Hello everyone. Has anyone tried EMDR for their OCD? I know ERP is usually the first line of treatment but my therapist only offers the former. I’m just wondering if anyone has tried it and what the results were. Thanks for any help or advice. Eddie
Hello everyone. Has anyone tried EMDR for their OCD? I know ERP is usually the first line of treatment but my therapist only offers the former. I’m just wondering if anyone has tried it and what the results were. Thanks for any help or advice. Eddie
Traps67
in
My OCD Community
1 year ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
1 year ago
Pace lesson learned
There has been a lot about pace and distance in the chat recently here’s my story… I graduated 3 months ago and have done 3 Parkruns so far (what a great organisation!) I was determined to go faster on my second PR. Big mistake! Took me about 20 minutes to realise I was struggling, my breath wasn’t
There has been a lot about pace and distance in the chat recently here’s my story… I graduated 3 months ago and have done 3 Parkruns so far (what a great organisation!) I was determined to go faster on my second PR. Big mistake! Took me about 20 minutes to realise I was struggling, my breath wasn’t
Jog176
Graduate
in
Couch to 5K
2 years ago
anticoagulant and injections for Macular degeneration?
I am on anticoagulant for Afib, I just had a 2nd injection for wet macular degeneration. I am concerned about how safe I am with taking these two drugs? Please let me know your thoughts as I am worried!
I am on anticoagulant for Afib, I just had a 2nd injection for wet macular degeneration. I am concerned about how safe I am with taking these two drugs? Please let me know your thoughts as I am worried!
Slattery
in
Macular Society
2 years ago
Preparation for surgery
Hello, I am due to have surgery for a macular hole in my left eye, in the next couple of weeks. Please could anyone advise me on what equipment is the most helpful to help with 'posturing', whichI have to do for a week. I am feeling pretty daunted by the whole thing!
Hello, I am due to have surgery for a macular hole in my left eye, in the next couple of weeks. Please could anyone advise me on what equipment is the most helpful to help with 'posturing', whichI have to do for a week. I am feeling pretty daunted by the whole thing!
marypw
in
Macular Society
2 years ago
Is vision loss always permanent?
Is it always the case that any vision loss due to glaucoma is permanent? My son (diagnosed with juvenile open angle last year, now aged 20) has a grey blurred area in the centre of one of his eyes and a trip to A&E showed his perssure to be 63 in the affected eye and 50 in the other. Following an emergency
Is it always the case that any vision loss due to glaucoma is permanent? My son (diagnosed with juvenile open angle last year, now aged 20) has a grey blurred area in the centre of one of his eyes and a trip to A&E showed his perssure to be 63 in the affected eye and 50 in the other. Following an emergency
Dodie68
in
Glaucoma UK
2 years ago
allergic to eye drops
is anyone else allergic to ALL the eye drops? Had xalacom and xalatan for years, no problem. Then changed several times and ended up with cosopt and monopost. Eyes became swollen, red itchy. Changed to preservative free with the same reaction. Have retried most of the others with the same result. It
is anyone else allergic to ALL the eye drops? Had xalacom and xalatan for years, no problem. Then changed several times and ended up with cosopt and monopost. Eyes became swollen, red itchy. Changed to preservative free with the same reaction. Have retried most of the others with the same result. It
Islandhome
in
Glaucoma UK
2 years ago
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