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Experiences with
Mast cell activation syndrome (MCAS)
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Face masks - recommendations?
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
Thinking of everyone going through a mmc
Hey, I know there are a few that have been through a miscarriage in the last couple of weeks and a few that have opted for surgery. I had an MVA this morning so I totally feel for you all. The procedure really wasn’t very pleasant and my husband couldn’t join me which was less than ideal. However the
Hey, I know there are a few that have been through a miscarriage in the last couple of weeks and a few that have opted for surgery. I had an MVA this morning so I totally feel for you all. The procedure really wasn’t very pleasant and my husband couldn’t join me which was less than ideal. However the
hifer
in
Fertility Network UK
4 years ago
polyp removal cost ?
Hi everyone ,had anyone polyp removal from the uterus ,do you now how much it cost on private clinic ,i am doing IVF and because of this polyp i had to freeze my fresh transfer ,i do not where to take it off the GP it is closed ,i want to do it in private ?thank you
Hi everyone ,had anyone polyp removal from the uterus ,do you now how much it cost on private clinic ,i am doing IVF and because of this polyp i had to freeze my fresh transfer ,i do not where to take it off the GP it is closed ,i want to do it in private ?thank you
Blerta
in
Fertility Network UK
4 years ago
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Mirena IUD levonorgestrel levels after 6 years?
Hi there, I decided to have the Mirena IUD fitted 6 years ago for the treatment of Endio and will now need this replaced. Does anyone know how the hormonal side of the Mirena works in terms of longevity. ie Should I expect any side effects when this is replaced as the level of levonorgestrel has lessened
Hi there, I decided to have the Mirena IUD fitted 6 years ago for the treatment of Endio and will now need this replaced. Does anyone know how the hormonal side of the Mirena works in terms of longevity. ie Should I expect any side effects when this is replaced as the level of levonorgestrel has lessened
Posh5000
in
Endometriosis UK
4 years ago
Restless legs. Struggling a lot.
I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2 weeks now. And i am still tossing and turning at night and can’t sleep. Waking up during night the checking the time. I am about to cry my eyes out now. I can’t cope
I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2 weeks now. And i am still tossing and turning at night and can’t sleep. Waking up during night the checking the time. I am about to cry my eyes out now. I can’t cope
Hayley20202
in
Restless Legs Syndrome
4 years ago
New to site
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Bate
in
Thyroid UK
4 years ago
Mast cell activation, a common comorbidity to Lyme
Tina Peers on her approach to treating
mast
cell
activation
syndrome
, a common comorbidity of Lyme. It took me a long time to find a doctor who knows the condition and was willing to be interviewed. I hope you find it helpful.
Tina Peers on her approach to treating
mast
cell
activation
syndrome
, a common comorbidity of Lyme. It took me a long time to find a doctor who knows the condition and was willing to be interviewed. I hope you find it helpful.
sq1111
in
Living with Lyme Disease UK
4 years ago
Mast cell activation
Tina Peers on her approach to treating
mast
cell
activation
syndrome
, a common comorbidity of EDS. It took me a long time to find a doctor who knows the condition and was willing to be interviewed. I hope you find it helpful.
Tina Peers on her approach to treating
mast
cell
activation
syndrome
, a common comorbidity of EDS. It took me a long time to find a doctor who knows the condition and was willing to be interviewed. I hope you find it helpful.
sq1111
in
Ehlers-Danlos Support UK
4 years ago
A JEDI WARRIOR's TALE
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
socrates_8
in
MPN Voice
4 years ago
What are my diagnostics options?
Hi there, I'm a 33 years old male who have been suffering from restless legs since I was 11 - long before I knew there was a thing called RLS. My grandmother and mother both have chronic restless legs as well. My condition is quite bad. I have restless legs every single day, and it's wearing me down
Hi there, I'm a 33 years old male who have been suffering from restless legs since I was 11 - long before I knew there was a thing called RLS. My grandmother and mother both have chronic restless legs as well. My condition is quite bad. I have restless legs every single day, and it's wearing me down
Swincei
in
Restless Legs Syndrome
4 years ago
Inj. Hertraz insurance cover
Hi Everyone, This is regarding insurance cover for Trastuzumab(Hertraz Inj.). The cashless claim for this was rejected recently for 2nd cycle claiming it was not payable by UHC TPA, while the same was approved for the 1st cycle. I don't know why they rejected it for 2nd cycle. I have applied for reimbursement
Hi Everyone, This is regarding insurance cover for Trastuzumab(Hertraz Inj.). The cashless claim for this was rejected recently for 2nd cycle claiming it was not payable by UHC TPA, while the same was approved for the 1st cycle. I don't know why they rejected it for 2nd cycle. I have applied for reimbursement
MdSal
in
Breast Cancer India
4 years ago
polyhydramnios - too much amniotic fluid?
Hello, Just got back from a 32 week growth scan (booked in because baby’s been measuring above 95th percentile) and have been told I have polyhydramnios. I’ve been asked to go back tomorrow to repeat my glucose tolerance test which I previously passed about 7 weeks ago and have been told I’ll be induced
Hello, Just got back from a 32 week growth scan (booked in because baby’s been measuring above 95th percentile) and have been told I have polyhydramnios. I’ve been asked to go back tomorrow to repeat my glucose tolerance test which I previously passed about 7 weeks ago and have been told I’ll be induced
Solly-44
in
Pregnancy and Parenting Support
4 years ago
Buprinorphine/methadone anyone?
LONG TERM RLS and PLMD sufferer here. Reaching out to anyone who may have tried methadone or buprinorphine? I could list everything else I have taken for this disorder but I think you would get bored! These medications are my next hope (if I can find a prescriber).
LONG TERM RLS and PLMD sufferer here. Reaching out to anyone who may have tried methadone or buprinorphine? I could list everything else I have taken for this disorder but I think you would get bored! These medications are my next hope (if I can find a prescriber).
Nikwat
in
Restless Legs Syndrome
4 years ago
MCAS, the cause of my migraines
Tina Peers on her approach to treating histamine intolerance/
mast
cell
activation
syndrome
(MCAS) -> migraines are a common symptom of MCAS and it's the reason why I suffer from them. It took me a long time to find a doctor who knows the condition and was willing to be interviewed.
Tina Peers on her approach to treating histamine intolerance/
mast
cell
activation
syndrome
(MCAS) -> migraines are a common symptom of MCAS and it's the reason why I suffer from them. It took me a long time to find a doctor who knows the condition and was willing to be interviewed.
sq1111
in
Migraine Support
4 years ago
Shielding updates and Q&A, webinars for each UK country are now opening for registration
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
Shielding updates and Q&A, the webinars for each UK country are now opening for registration
Good morning With imminent announcements about government shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care are working with specialist haematologists in each country to support you through changes. Each webinar will update
Good morning With imminent announcements about government shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care are working with specialist haematologists in each country to support you through changes. Each webinar will update
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Giant Cell Arteritis
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hidden
in
PMRGCAuk
4 years ago
Stem cell transplant anniversary
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
Dodders
in
MPN Voice
4 years ago
Trying Buprenorphine after methadone
Hi, All, I'm in the process of trying out buprenorphine (Subutex sublingual tablets). I had been on 12.5 mg methadone for 1 1/2 years. It did a super job in controlling my RLS (after augmenting on all the DAs, and finally getting free of those about 1 year ago). But I have developed depression since
Hi, All, I'm in the process of trying out buprenorphine (Subutex sublingual tablets). I had been on 12.5 mg methadone for 1 1/2 years. It did a super job in controlling my RLS (after augmenting on all the DAs, and finally getting free of those about 1 year ago). But I have developed depression since
rls_optimist
in
Restless Legs Syndrome
4 years ago
Hydroxychloroquine
Hi All, I haven’t posted on here for ages . Hope people are keeping as well as they can be, both physically and mentally during lockdown. I was finally diagnosed with Lupus SLE and Sicca Syndrome at the start of this year . I have been on hydroxychloroquine since January. I do feel it’s helping with
Hi All, I haven’t posted on here for ages . Hope people are keeping as well as they can be, both physically and mentally during lockdown. I was finally diagnosed with Lupus SLE and Sicca Syndrome at the start of this year . I have been on hydroxychloroquine since January. I do feel it’s helping with
Seren65
in
LUPUS UK
4 years ago
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