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Unknown Condition
It’s been 24 years since I found out that I have McCune Albright Syndrome/Fibrous dysplasia. This is a very rare condition affecting my bones and endocrine system (Hormones). I have fibrous dysplasia in my head, face, jaw and it’s taken away most of my front teeth. I have a disfigurement although I don
It’s been 24 years since I found out that I have McCune Albright Syndrome/Fibrous dysplasia. This is a very rare condition affecting my bones and endocrine system (Hormones). I have fibrous dysplasia in my head, face, jaw and it’s taken away most of my front teeth. I have a disfigurement although I don
Leeds1968
in
Changing Faces
2 years ago
I have a wonderful Solicitor
hi everyone, it’s been a while since I last posted my updated news. My divorce has been put on hold for whatever reason which I do not understand. I payed out 600 pounds for flights and accommodation but had to cancel due to the above. I am feeling so much better than before as I was in a mess physically
hi everyone, it’s been a while since I last posted my updated news. My divorce has been put on hold for whatever reason which I do not understand. I payed out 600 pounds for flights and accommodation but had to cancel due to the above. I am feeling so much better than before as I was in a mess physically
1949liz
in
Headway
2 years ago
Understanding Palliative Care
I received a email today: There is a lot of confusion when it comes to palliative care.
Many people equate the term palliative care with hospice
, but the two terms are not interchangeable. Palliative care is a medical approach that can be applied at any stage of disease – even at the time of
I received a email today: There is a lot of confusion when it comes to palliative care.
Many people equate the term palliative care with hospice
, but the two terms are not interchangeable. Palliative care is a medical approach that can be applied at any stage of disease – even at the time of
Gcf51
in
Cure Parkinson's
2 years ago
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Still worried
I'm still worried after 8months and having ultrasound scans, blood rests, fit tests and others and all are OK results but I'm still having the lower left side bowel pain, I've had 2 colonoscopies in 2017 and the end of 2019 and were clear and ok apart from gas but am i still best having another bowel
I'm still worried after 8months and having ultrasound scans, blood rests, fit tests and others and all are OK results but I'm still having the lower left side bowel pain, I've had 2 colonoscopies in 2017 and the end of 2019 and were clear and ok apart from gas but am i still best having another bowel
Calamity64
in
IBS Network
2 years ago
New post, old member
Good Morning I should apologise for not being a bit more proactive on this site. I suffered a TBI caused by an AVM 2 years ago (this caused a subarachnoid hemmorage) this has left me with permanent double vision and a balance problem. I spent 4 months in hospital, only left there because I forced it
Good Morning I should apologise for not being a bit more proactive on this site. I suffered a TBI caused by an AVM 2 years ago (this caused a subarachnoid hemmorage) this has left me with permanent double vision and a balance problem. I spent 4 months in hospital, only left there because I forced it
timd59
in
Headway
2 years ago
3 Peg injections later
Hi My Friends! I hope everyone is doing well! Its been very hot and humid, here. I don’t appreciate it! LOL. I have had 3 Peg injections and have my 4th this Friday. I am finding that my energy levels have plummeted. I am feeling weak and getting breathless with little activity. My HCT was 43.7 a week
Hi My Friends! I hope everyone is doing well! Its been very hot and humid, here. I don’t appreciate it! LOL. I have had 3 Peg injections and have my 4th this Friday. I am finding that my energy levels have plummeted. I am feeling weak and getting breathless with little activity. My HCT was 43.7 a week
Wewo01
in
MPN Voice
2 years ago
How common is bezoar in PD?
Bezoar is a concretion of food in the abdomen. Photos resemble cannon balls. One sign of a bezoar is gastroparesis: Stomach emptying very slowly. I don't have the common signs of PD; No slowness or freezing in place . I have constipation. In two weeks I have to swallow a "Smart Pill" which
Bezoar is a concretion of food in the abdomen. Photos resemble cannon balls. One sign of a bezoar is gastroparesis: Stomach emptying very slowly. I don't have the common signs of PD; No slowness or freezing in place . I have constipation. In two weeks I have to swallow a "Smart Pill" which
kaypeeoh
in
Cure Parkinson's
2 years ago
Trialing disimpaction
My 4 year old has been having very soft stool leaks on and off for most of her potty training life. We have had periods of several weeks at a time where she is absolutely fine and then the accidents begin again. The doctors felt her tummy and didn't think it felt like she was constipated, but after
My 4 year old has been having very soft stool leaks on and off for most of her potty training life. We have had periods of several weeks at a time where she is absolutely fine and then the accidents begin again. The doctors felt her tummy and didn't think it felt like she was constipated, but after
Minnie654
in
ERIC
2 years ago
Moviprep colonoscopy with IBS constipation
Hello, I'm having a colonoscopy in 2 days time and really worried moviprep is not going to work and make things even worse with my chronic constipation. Any experiences with moviprep and chronic constipation? Thank you for reading
Hello, I'm having a colonoscopy in 2 days time and really worried moviprep is not going to work and make things even worse with my chronic constipation. Any experiences with moviprep and chronic constipation? Thank you for reading
Bluemon75
in
IBS Network
2 years ago
2nd recurrence 😢
Nov 17 3c HGSOC, BRACA2, surgery, chemo, immunotherapy trial, failed trial, 1st recurrence, chemo followed by Niraparib since April 2019 with no side effects at all, CA124 9-13. Was convinced I was ‘the one’ it was going to work for but in May CA125 went up by 3. Nurse wasn’t concerned, I knew!! Then
Nov 17 3c HGSOC, BRACA2, surgery, chemo, immunotherapy trial, failed trial, 1st recurrence, chemo followed by Niraparib since April 2019 with no side effects at all, CA124 9-13. Was convinced I was ‘the one’ it was going to work for but in May CA125 went up by 3. Nurse wasn’t concerned, I knew!! Then
Doglover1410
in
My Ovacome
2 years ago
Adventures in anal probing...
I saw a new doc today for gastroparesis. She said my diet is the worst and a big cause of my gastric problems. I need to swallow a "Smart Pill" which will travel through my guts recording things and I need an anal probe which will measure the muscle contractions of my colon and rectum. We had
I saw a new doc today for gastroparesis. She said my diet is the worst and a big cause of my gastric problems. I need to swallow a "Smart Pill" which will travel through my guts recording things and I need an anal probe which will measure the muscle contractions of my colon and rectum. We had
kaypeeoh
in
Cure Parkinson's
2 years ago
Ruined nose job
I had a nosejob 2 weeks ago, and it ruined everything. I had a very average nose before the surgery, but i wanted to correct my bump on my side profile. Now i look bad from the side and also from the front, i look like Michael Jackson after all those surgeries and i hate it, i cry every hour, cant sleep
I had a nosejob 2 weeks ago, and it ruined everything. I had a very average nose before the surgery, but i wanted to correct my bump on my side profile. Now i look bad from the side and also from the front, i look like Michael Jackson after all those surgeries and i hate it, i cry every hour, cant sleep
Naja21
in
Changing Faces
2 years ago
Having a Bad Week
Another painful flare up and couldn't get out of the bathroom when I was due to go out. Happens so often it must be a trigger. Starts with cramps and I have a few seconds to make it to the loo. Then in and out all day with D. Had many tests, colonoscopies, SIBO etc. Tried various meds, CBT, hynotherapy
Another painful flare up and couldn't get out of the bathroom when I was due to go out. Happens so often it must be a trigger. Starts with cramps and I have a few seconds to make it to the loo. Then in and out all day with D. Had many tests, colonoscopies, SIBO etc. Tried various meds, CBT, hynotherapy
Katerina1
in
IBS Network
2 years ago
Amgevita / Adalimumab side effects
Hi everyone just a quick update, four months now taking 40mg Amgevita / Adalimumab. The side effects are now appearing which are not that good at all and hoping they will pass but my mood is up and down, feeling anxious, nauseous and tired on and off, my guts do not feel good at all, sometimes after
Hi everyone just a quick update, four months now taking 40mg Amgevita / Adalimumab. The side effects are now appearing which are not that good at all and hoping they will pass but my mood is up and down, feeling anxious, nauseous and tired on and off, my guts do not feel good at all, sometimes after
Frankiefocus
in
NRAS
2 years ago
Finally heard the words aReferral for Neurology
FINALLY after nearly 5years of getting nowhere with my G.P about my historic injuries and my head injury. today I've been to a MSK appointment to speak about my MRI results..he said I'm going to refer you to Neurology to look at your brain as things don't tally up on my left side🤣no shit Sherlock
FINALLY after nearly 5years of getting nowhere with my G.P about my historic injuries and my head injury. today I've been to a MSK appointment to speak about my MRI results..he said I'm going to refer you to Neurology to look at your brain as things don't tally up on my left side🤣no shit Sherlock
Survivor37
in
Headway
2 years ago
COVID induced coma
I was put into a induced coma because of COVID October 2021 and still experiencing flashbacks of the terrible dreams and nightmares there still so vivid I’m just not the same person since the coma , does anyone else have the same problem ?
I was put into a induced coma because of COVID October 2021 and still experiencing flashbacks of the terrible dreams and nightmares there still so vivid I’m just not the same person since the coma , does anyone else have the same problem ?
Denylady
in
ICUsteps
2 years ago
So Many Things
Good morning, Everyone! It has been a lovely weekend and I was able to take my beloved husband out for a wheelchair ride. He does so enjoy being able to be outdoors. He is in probably the final stages of CBD. His speech has recently become mostly slurred yes and no. His right side is now, for all intents
Good morning, Everyone! It has been a lovely weekend and I was able to take my beloved husband out for a wheelchair ride. He does so enjoy being able to be outdoors. He is in probably the final stages of CBD. His speech has recently become mostly slurred yes and no. His right side is now, for all intents
Indiana-Girl
in
PSP Association
2 years ago
Putting an older child back in nappies
I really need some advice please I have a 10 year old with profound Developmental Verbal Dypraxia. His speech is very limited. His intelligence and comprehension is fine, even though he is extremely behind in areas at school. He is also a very anxious and shy child. He does goes to a special school
I really need some advice please I have a 10 year old with profound Developmental Verbal Dypraxia. His speech is very limited. His intelligence and comprehension is fine, even though he is extremely behind in areas at school. He is also a very anxious and shy child. He does goes to a special school
Pinkdotydot
in
ERIC
2 years ago
Does Probiotic help with bloating
Hello everyone, wondering if anyone has used a probiotic from a British Company called “BetterVits” it has good reviews but is expensive. I. Prepared to pay if it gets good results. £60 for 3 bottles of 30 or £40 for 1 bottle. They do give a 60 day money back guarantee. The tables contain Lactobacillus
Hello everyone, wondering if anyone has used a probiotic from a British Company called “BetterVits” it has good reviews but is expensive. I. Prepared to pay if it gets good results. £60 for 3 bottles of 30 or £40 for 1 bottle. They do give a 60 day money back guarantee. The tables contain Lactobacillus
Squash56
in
IBS Network
2 years ago
Has anyone used Butyric acid for PD?
Just read something on Parkinson's News that butyric acid eliminated tremors and symptoms of Parkinson's. Sounds to good to be true. Your thoughts.
Just read something on Parkinson's News that butyric acid eliminated tremors and symptoms of Parkinson's. Sounds to good to be true. Your thoughts.
Smittybear7
in
Cure Parkinson's
2 years ago
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