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Dense adhesions after 15 surgeries, + 2 rare medical conditions
At the age of 25, my life changed forever. After 4 years, 2 surgeries and no diagnosis, as to what the problems was, I eventually found out I had multiple intestinal lipomatosis and Ehlers Danlos Syndrome. Ileostomy formed 1996. 13 more surgeries have performed. Due to absorption problems, + major
At the age of 25, my life changed forever. After 4 years, 2 surgeries and no diagnosis, as to what the problems was, I eventually found out I had multiple intestinal lipomatosis and Ehlers Danlos Syndrome. Ileostomy formed 1996. 13 more surgeries have performed. Due to absorption problems, + major
Eegmetem
in
Pelvic Pain Support Network
5 months ago
Demodex Blepharitis treatments?
Hello, all. Glaucoma diagnosed late 2019. Initially drops tolerated ok think Latanoprost plus other.After a while developed bad red eyes, itching. Tried various drops since including preservative free, had both cataracts done. Tablets Azetazoloimide? Worked well, not able stay on them! Stopped taking
Hello, all. Glaucoma diagnosed late 2019. Initially drops tolerated ok think Latanoprost plus other.After a while developed bad red eyes, itching. Tried various drops since including preservative free, had both cataracts done. Tablets Azetazoloimide? Worked well, not able stay on them! Stopped taking
TVTech
in
Glaucoma UK
8 months ago
PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
8 months ago
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angular cheilitis
I’ve suffer a lot from this I get it around 3/4 times a year but usually lasts about a week. I’m on my third week struggling with this and can’t find a lip balm or treatment. I heard Daktarin oral gel but it’s sold out everywhere and the pharmacy said they even finding it hard to get it in for people
I’ve suffer a lot from this I get it around 3/4 times a year but usually lasts about a week. I’m on my third week struggling with this and can’t find a lip balm or treatment. I heard Daktarin oral gel but it’s sold out everywhere and the pharmacy said they even finding it hard to get it in for people
Ladybitsandbobs
in
NRAS
8 months ago
Diagnosed today with an acoustic Neuroma.
Hi Everyone. I have just been told this morning that my MRI confirmed an acoustic neuroma. The ENT Doctor said he is now referring me to a specialist in Manchester. Can anyone tell me what to expect now ? Did anyone have any treatment for it ? Thank you.
Hi Everyone. I have just been told this morning that my MRI confirmed an acoustic neuroma. The ENT Doctor said he is now referring me to a specialist in Manchester. Can anyone tell me what to expect now ? Did anyone have any treatment for it ? Thank you.
Reddington__
in
Acoustic Neuroma Support
8 months ago
PIC - Punctate Inner Choroidopathy
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Rome2023
in
Macular Society
8 months ago
small eyey
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
Sufitzy
in
Glaucoma UK
8 months ago
2.5 year old, suddenly bedwetting
Hi all, my 2.5 year old has been night potty trained for 5 months with max 2 or 3 wee accidents in that time, but suddenly started bedwetting practically every night for a Week.She has always struggled with infrequent poos, likely caused by withholding. My gp agrees the bedwetting is likely due to impacted
Hi all, my 2.5 year old has been night potty trained for 5 months with max 2 or 3 wee accidents in that time, but suddenly started bedwetting practically every night for a Week.She has always struggled with infrequent poos, likely caused by withholding. My gp agrees the bedwetting is likely due to impacted
Blando
in
ERIC
8 months ago
hand warming creams
hello So I’m a long term suffer from raynauds (secondary) keeping hands warm is a challenge. I’ve got various gloves and hand warms but there are times when I can’t wear gloves or when the gloves aren’t effective. I’ve seen various hand creams to at say they warm the hands but has anyone tried any and
hello So I’m a long term suffer from raynauds (secondary) keeping hands warm is a challenge. I’ve got various gloves and hand warms but there are times when I can’t wear gloves or when the gloves aren’t effective. I’ve seen various hand creams to at say they warm the hands but has anyone tried any and
Enjoyswalking
in
Scleroderma & Raynaud's UK (SRUK)
8 months ago
Further update Gallbladder removal
So I am home after a long day. Had to get up at 5am to be at hospital by 7am. All the usual preps and questions then operation took place at 10am. Because I have an LBBB (No underlying heart issues) They were extra careful with monitoring so had an extra canula thingy in my inner wrist to monitor heart
So I am home after a long day. Had to get up at 5am to be at hospital by 7am. All the usual preps and questions then operation took place at 10am. Because I have an LBBB (No underlying heart issues) They were extra careful with monitoring so had an extra canula thingy in my inner wrist to monitor heart
Manderson27
in
British Liver Trust
8 months ago
Fostair - lactose-free?
I just had a telephone consult with my respiratory consultant. As the steroid in my Seretide inhaler is thought likely to be the cause of my recently diagnosed adrenal insufficiency, he proposes to switch me from Seretide to Fostair as the steroid in that is less potent. I am seeing conflicting information
I just had a telephone consult with my respiratory consultant. As the steroid in my Seretide inhaler is thought likely to be the cause of my recently diagnosed adrenal insufficiency, he proposes to switch me from Seretide to Fostair as the steroid in that is less potent. I am seeing conflicting information
JumpJiving
in
Asthma Community Forum
8 months ago
Varicose veins with scleroderma
Are there any other LSSc people out there also suffering from varicose veins? At my last check up with Royal Free I pointed out lots of new burst veins/ thread veins in my legs. They said it as early varicose veins, but they would ask my GP to refer me to vascular specialist close to me. RF implied
Are there any other LSSc people out there also suffering from varicose veins? At my last check up with Royal Free I pointed out lots of new burst veins/ thread veins in my legs. They said it as early varicose veins, but they would ask my GP to refer me to vascular specialist close to me. RF implied
LadyTrundle
in
Scleroderma & Raynaud's UK (SRUK)
8 months ago
Hashi symptoms still or tired/dry eyes?
Hey everyone, Still on my journey to "optimal" health and lab's whilst having Hashimoto's. Diagnosed 18 month ago. I have a strange one for you, or, not so strange, right now I'm not sure. So, currently on 162.5mcg of Levo and 10 mcg of Lio. I would say symptom wise I am feeling the best I have in
Hey everyone, Still on my journey to "optimal" health and lab's whilst having Hashimoto's. Diagnosed 18 month ago. I have a strange one for you, or, not so strange, right now I'm not sure. So, currently on 162.5mcg of Levo and 10 mcg of Lio. I would say symptom wise I am feeling the best I have in
dexterholland91
in
Thyroid UK
8 months ago
An enquiry about the evidence base regarding anticoagulants - my reply to a post that just went missing…..
Revised and edited post. My apologies if this post caused any confusion or led down the wrong track. Top Biscuit has been in touch with me and wishes to make the following very clear: Her post wasn't about anticoagulation at all, although she understands how it could lead the mind to the question of
Revised and edited post. My apologies if this post caused any confusion or led down the wrong track. Top Biscuit has been in touch with me and wishes to make the following very clear: Her post wasn't about anticoagulation at all, although she understands how it could lead the mind to the question of
Rainfern
in
AF Association
8 months ago
Recent blood tests
Hi, can anybody offer any guidance on my blood tests. I have paid to have them done by blue horizon. My blood was done at 8.45 before taking any medication. I take levo 175 one day followed by 150 the next. B12 supplement. I have been suffering from a feeling of being on a boat with weak legs. Bad brain
Hi, can anybody offer any guidance on my blood tests. I have paid to have them done by blue horizon. My blood was done at 8.45 before taking any medication. I take levo 175 one day followed by 150 the next. B12 supplement. I have been suffering from a feeling of being on a boat with weak legs. Bad brain
Colvic
in
Thyroid UK
8 months ago
Hair Loss on Acalabrutinib
Has anyone suffered significant hair loss while taking this drug? Does the hair loss stop at some point in time. Does the hair regrow? This is the one thing the oncologist said wouldn't happen. I have been taking an iron supplement and 5,000 mcg of biotin, information that I read in other posts. My hair
Has anyone suffered significant hair loss while taking this drug? Does the hair loss stop at some point in time. Does the hair regrow? This is the one thing the oncologist said wouldn't happen. I have been taking an iron supplement and 5,000 mcg of biotin, information that I read in other posts. My hair
Vinweesel2023
in
CLL Support
8 months ago
Delayed injection
I have wet md and glaucoma in both eyes. I was scheduled for left eye injection 1/10. I called to confirm my appointment that was made in Nov. and was told it had been cancelled. They said something about my insurance being FFS and I need CAP to get treatment. I have been going to this facility for
I have wet md and glaucoma in both eyes. I was scheduled for left eye injection 1/10. I called to confirm my appointment that was made in Nov. and was told it had been cancelled. They said something about my insurance being FFS and I need CAP to get treatment. I have been going to this facility for
eyeseeu
in
Macular Society
8 months ago
new here, would like some tips
Hi, I have had tinnitus all my life, from when I was a child every so often, a few times a day I would hear a loud whistle that would last about a minute. My Father passed away 5 years ago and 6 months after I have 3 types of tinnitus, the one I had from a child as well as pulsatilla tinnitus and a
Hi, I have had tinnitus all my life, from when I was a child every so often, a few times a day I would hear a loud whistle that would last about a minute. My Father passed away 5 years ago and 6 months after I have 3 types of tinnitus, the one I had from a child as well as pulsatilla tinnitus and a
Jacsav
in
Tinnitus UK
8 months ago
Update re: Gallbladder issue.
I am having my gall bladder removed on the 9th any advice or tips on recovery would be very welcome. Backstory is that I have had intermittent issues for several years. Mentioned to my GP (Male) who to be honest did not seem very interested in my symptoms, was given PPI for "indigestion" as blood
I am having my gall bladder removed on the 9th any advice or tips on recovery would be very welcome. Backstory is that I have had intermittent issues for several years. Mentioned to my GP (Male) who to be honest did not seem very interested in my symptoms, was given PPI for "indigestion" as blood
Manderson27
in
British Liver Trust
8 months ago
Update following meeting with MO
For those following my journey, I had a face-to-face meeting with my MO today and learnt a few things I didn't know. Firstly, the genetic test of the liver tumour the NHS do only tests for BRCA - no other genes. The reason appears to be that the only treatment they would offer is a Parp inhibitor so
For those following my journey, I had a face-to-face meeting with my MO today and learnt a few things I didn't know. Firstly, the genetic test of the liver tumour the NHS do only tests for BRCA - no other genes. The reason appears to be that the only treatment they would offer is a Parp inhibitor so
Benkaymel
in
Advanced Prostate Cancer
8 months ago
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