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Gaucher disease type 2 (GD2)
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atypical trigeminal neuralgia
Recently diagnosed with atypical trigeminal neuralgia, pain on left side of face/eye/head. I also have rheumatoid arthritis which I take methotrexate 20mg once per week for. Does anyone else know anything about this, or what helps, in a lot of pain.
Recently diagnosed with atypical trigeminal neuralgia, pain on left side of face/eye/head. I also have rheumatoid arthritis which I take methotrexate 20mg once per week for. Does anyone else know anything about this, or what helps, in a lot of pain.
PurpleDuckie
in
PMRGCAuk
2 months ago
Newly Diagnosed
Hello, I’m new to this forum and was only diagnosed with SLE in late December. I’ve also got secondary triple positive antiphospholipid antibodies. I’m 26 and I’ve always lived a very active/outgoing lifestyle and have always tried to be healthy so it I’m finding it all a bit difficult to process.
Hello, I’m new to this forum and was only diagnosed with SLE in late December. I’ve also got secondary triple positive antiphospholipid antibodies. I’m 26 and I’ve always lived a very active/outgoing lifestyle and have always tried to be healthy so it I’m finding it all a bit difficult to process.
ChloeScotland
in
LUPUS UK
2 months ago
Advice
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
PaumicB123
in
My Ovacome
6 months ago
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Donepezil as an aid for PSP
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Richard33
in
PSP Association
6 months ago
B6 - advice
I’m confused about B6. is the advice with Co-Careldopa not to take, at all. Or to take after Co-Careldopa has been absorbed. my recent blood tests showed me deficient in B6. thanks
I’m confused about B6. is the advice with Co-Careldopa not to take, at all. Or to take after Co-Careldopa has been absorbed. my recent blood tests showed me deficient in B6. thanks
Nb11
in
Cure Parkinson's
6 months ago
Lupus Diagnosis
I haven't been online for some times, perhaps years. I don't think I have posted since losing my Mum in August 2021 and then I lost my Dad last year June. My health, not surprisingly, has been all over the place and under the following hospital departments: Lupus Rheumatology, General Rheumatology -
I haven't been online for some times, perhaps years. I don't think I have posted since losing my Mum in August 2021 and then I lost my Dad last year June. My health, not surprisingly, has been all over the place and under the following hospital departments: Lupus Rheumatology, General Rheumatology -
KeepingUpBeat
in
LUPUS UK
2 months ago
Any readers?
Would really appreciate recommendation for books linking autoimmune disease and trauma. Somebody I care about wants to read about it. Thank you. 😊
Would really appreciate recommendation for books linking autoimmune disease and trauma. Somebody I care about wants to read about it. Thank you. 😊
Pawsedagain
in
Thyroid UK
2 months ago
Adrenal cortisol expertise needed
Hi! I was diagnosed with adrenal fatigue / low cortisol 10-plus years ago and take 10 mg of hydrocortisone (tablet) in the morning and at noon. I just received results of diurnal saliva cortisol test and am surprised/confused at the results. Does this group help with adrenal issues, or is there a different
Hi! I was diagnosed with adrenal fatigue / low cortisol 10-plus years ago and take 10 mg of hydrocortisone (tablet) in the morning and at noon. I just received results of diurnal saliva cortisol test and am surprised/confused at the results. Does this group help with adrenal issues, or is there a different
Rileyfloof
in
Thyroid UK
6 months ago
Obesity Associated With Faster MS Disease Progression
[i]
Obesity in multiple sclerosis (MS) was tied to faster worsening of disability and an increased risk of physical, psychological, and cognitive decline, a prospective cohort study showed.
[/i] [i]
[/i]
https://www.medpagetoday.com/meetingcoverage/actrims/108992?xid=nl_mpt_DHE_2024-03
[i]
Obesity in multiple sclerosis (MS) was tied to faster worsening of disability and an increased risk of physical, psychological, and cognitive decline, a prospective cohort study showed.
[/i] [i]
[/i]
https://www.medpagetoday.com/meetingcoverage/actrims/108992?xid=nl_mpt_DHE_2024-03
BettysMom
in
My MSAA Community
2 months ago
Zytiga - Lupron
I was on Zytiga ( now Abi) with lup for several years and it kept my PSA to undetectable. I am now on 0rg0vyx instead of lup and my PSA remains undetectable after 6 years. Sode effects have been tolerable EXCEPT the I developed osteoporosis of the spin and now have multiple collapsed vertebrae and
I was on Zytiga ( now Abi) with lup for several years and it kept my PSA to undetectable. I am now on 0rg0vyx instead of lup and my PSA remains undetectable after 6 years. Sode effects have been tolerable EXCEPT the I developed osteoporosis of the spin and now have multiple collapsed vertebrae and
Schnab
in
Advanced Prostate Cancer
6 months ago
New study indicates that taxifolin "could" reduce chronic inflammation, promote healthy aging and improve healthspan of lupus sufferers.
[i]Linda May-Zhang, PhD, VP Innovation at Blue California and an author on the study told Longevity.Technology that taxifolin shows promise in addressing oxidative stress and alleviating lupus symptoms by inhibiting NETosis. Photographs courtesy of Ramadan Ali and Linda May-Zhang[/i] New study indicates
[i]Linda May-Zhang, PhD, VP Innovation at Blue California and an author on the study told Longevity.Technology that taxifolin shows promise in addressing oxidative stress and alleviating lupus symptoms by inhibiting NETosis. Photographs courtesy of Ramadan Ali and Linda May-Zhang[/i] New study indicates
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 months ago
Rhupus
I have rhupus which is lupus and severe rheumatoid. arthritis having both and it being aggressive there r only 1% to 2% in the world that ever have both I guess I was just the lucky one lol unfortunately this is the most painful disease in the world you get never get over less your bones hurt so bad
I have rhupus which is lupus and severe rheumatoid. arthritis having both and it being aggressive there r only 1% to 2% in the world that ever have both I guess I was just the lucky one lol unfortunately this is the most painful disease in the world you get never get over less your bones hurt so bad
Buglove22
in
LUpus Patients Understanding and Support
2 months ago
OK bloods...Still plateauing??
Hi again 👋About 7 weeks ago I increased my levo from 50mcg to 75mcg after discussing here. Initially, revved up again. Happy days- more energy, lost a small bit of weight, mood improved etc. I have started slipping back again and thought I'd get my bloods done again before I do anymore 'tinkering'.
Hi again 👋About 7 weeks ago I increased my levo from 50mcg to 75mcg after discussing here. Initially, revved up again. Happy days- more energy, lost a small bit of weight, mood improved etc. I have started slipping back again and thought I'd get my bloods done again before I do anymore 'tinkering'.
Caffeinefreezone
in
Thyroid UK
6 months ago
Lupus diagnosis after taking hydroxychloriquine for 14 months
Hi guys, hope everyone is well. Since getting diagnosed with lupus last month one thing has been really bothering me... As bit of a back story I was diagnosed with RA a few years ago. Over the last 6-8 months I've been amassing a bunch of other symptoms which last month resulted in my RA diagnosed
Hi guys, hope everyone is well. Since getting diagnosed with lupus last month one thing has been really bothering me... As bit of a back story I was diagnosed with RA a few years ago. Over the last 6-8 months I've been amassing a bunch of other symptoms which last month resulted in my RA diagnosed
Diagnosis_Collector
in
LUPUS UK
2 months ago
Blood Test for MS Activity Gets FDA Breakthrough Designation
The US Food and Drug Administration (FDA) has granted breakthrough device designation to the Elecsys Neurofilament Light Chain (NfL) test for multiple sclerosis (MS). November, 2023
Made by Roche, the test is intended to be used as an aid in detection of disease activity in adults aged 18
The US Food and Drug Administration (FDA) has granted breakthrough device designation to the Elecsys Neurofilament Light Chain (NfL) test for multiple sclerosis (MS). November, 2023
Made by Roche, the test is intended to be used as an aid in detection of disease activity in adults aged 18
BettysMom
in
My MSAA Community
2 months ago
REMINDER! Harrogate Lupus Group - Coffee and Chat meeting - 2nd March 10.30am
REMINDER! Saturday 2nd March, the Harrogate Lupus Group will be meeting at 10.30am, at the Woodlands Methodist Church Hall, 71 Wetherby Road, Harrogate, HG2 7SG. We will be joined by Frances Pearson, who will be talking about her ideas on the Lupus Observatory. Everyone is welcome to join! If you
REMINDER! Saturday 2nd March, the Harrogate Lupus Group will be meeting at 10.30am, at the Woodlands Methodist Church Hall, 71 Wetherby Road, Harrogate, HG2 7SG. We will be joined by Frances Pearson, who will be talking about her ideas on the Lupus Observatory. Everyone is welcome to join! If you
michaellasmith
Administrator
in
LUPUS UK
2 months ago
Low hemoglobin
I started hemodialysis in Aug with an emergency chest catheter. I had 2 units of blood as my hemoglobin was low while in hospital. Then in hospital again in September and another 2 units of blood. Got my labs today and hemoglobin was 6.8 so they gave me Mircera and iron. When I did PD I got Mircera
I started hemodialysis in Aug with an emergency chest catheter. I had 2 units of blood as my hemoglobin was low while in hospital. Then in hospital again in September and another 2 units of blood. Got my labs today and hemoglobin was 6.8 so they gave me Mircera and iron. When I did PD I got Mircera
horsie63
in
Kidney Dialysis
6 months ago
Laryngitis and lupus
Hi, I am having my 2nd bout of laryngitis in 10 weeks, having never having had it before. I have just looked on Doctor Google and it says that my laryngitis can be caused by my lupus. Is this correct? Is this something I need to mention to my lupus specialist? I am due to start on methotrexate next
Hi, I am having my 2nd bout of laryngitis in 10 weeks, having never having had it before. I have just looked on Doctor Google and it says that my laryngitis can be caused by my lupus. Is this correct? Is this something I need to mention to my lupus specialist? I am due to start on methotrexate next
pattypatchwork
in
LUPUS UK
2 months ago
New diagnosis
Hi there, I got I'll from glandular fever in my late teens and have been given different diagnosis over the years and now I have been told I have rheumatoid arthritis. I'm hopefully going to start sulfasalazine and just wondered has this been successful for people? I've been so fatigued for so long,
Hi there, I got I'll from glandular fever in my late teens and have been given different diagnosis over the years and now I have been told I have rheumatoid arthritis. I'm hopefully going to start sulfasalazine and just wondered has this been successful for people? I've been so fatigued for so long,
DogsMakeLifeGood
in
NRAS
2 months ago
TSH 37 - taking Levothyroxine 200mg
hi I was hoping to get some help / advice I have suffered with underactive thyroid for around 4/5 years Started on 75mg Levothyroxine had regular repeat tests over the years and doctor has just increased my Levothyroxine dose each time as my TSH has not reduced my latest result was a TSH of 37
hi I was hoping to get some help / advice I have suffered with underactive thyroid for around 4/5 years Started on 75mg Levothyroxine had regular repeat tests over the years and doctor has just increased my Levothyroxine dose each time as my TSH has not reduced my latest result was a TSH of 37
Jadewhitcombe
in
Thyroid UK
2 months ago
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