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Experiences with
Mast cell activation syndrome (MCAS)
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Mast cells and RLS
But recently as I have learned about MCAS (
mast
cell
activation
syndrome
) it has made tremendous sense to me what has happened over the last 20 years. Intensity comes and goes and has to do with foods I react to, that I never had a problem with pre-mold exposure.
But recently as I have learned about MCAS (
mast
cell
activation
syndrome
) it has made tremendous sense to me what has happened over the last 20 years. Intensity comes and goes and has to do with foods I react to, that I never had a problem with pre-mold exposure.
Bernaldi
in
Restless Legs Syndrome
2 months ago
Treatment for fibro, MCAS, hypermobility syndrom (after catching covid) and long term covid sufferers
After months of pain and inconclusive diagnosis by various doctors, I have discovered that those with MCAS (
Mast
Cell
Activation
Syndrome
) as well as those with Hypermobility, get hugely affected by covid infections.
After months of pain and inconclusive diagnosis by various doctors, I have discovered that those with MCAS (
Mast
Cell
Activation
Syndrome
) as well as those with Hypermobility, get hugely affected by covid infections.
Divinesoul
in
Fibromyalgia Action UK
4 months ago
FLARE at 5.25mg??
My
Mast
Cell
Activation
Syndrome
/ Histamine Intolerance / Multiple Chemical Sensitivity issues have been my struggle. And of course trying to get off of the Cortisone. I was convinced that the PMR was in total remission.
My
Mast
Cell
Activation
Syndrome
/ Histamine Intolerance / Multiple Chemical Sensitivity issues have been my struggle. And of course trying to get off of the Cortisone. I was convinced that the PMR was in total remission.
Slosh
in
PMRGCAuk
10 months ago
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TSH v low but T4/T3 in range - doc wants to reduce T4
I have Hashimoto’s and another immune-related condition called
Mast
Cell
Activation
Syndrome
, which is quite rare but super involved - the short version is that I’m allergic to many things and have to be super careful to manage food, sleep, stress, exercise, work, avoid perfumes/chemicals etc.
I have Hashimoto’s and another immune-related condition called
Mast
Cell
Activation
Syndrome
, which is quite rare but super involved - the short version is that I’m allergic to many things and have to be super careful to manage food, sleep, stress, exercise, work, avoid perfumes/chemicals etc.
ironchica
in
Thyroid UK
7 months ago
Finally, off DA but perhaps not for much longer
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
MrVimes
in
Restless Legs Syndrome
20 days ago
*MCAS
LDN is used in
Mast
Cell
Activation
Syndrome
(MCAS) treatment plans. The documentary aims to help educate medical professionals and the public on MCAS, postural orthostatic tachycardia (POTS), and Ehlers-Danlos syndrome. Diagnosis and a multi-prong approach to treatment will be discussed.
LDN is used in
Mast
Cell
Activation
Syndrome
(MCAS) treatment plans. The documentary aims to help educate medical professionals and the public on MCAS, postural orthostatic tachycardia (POTS), and Ehlers-Danlos syndrome. Diagnosis and a multi-prong approach to treatment will be discussed.
Shewulf
Administrator
in
LDN Research Trust
1 year ago
Levothyroxine for Underactive thyroid
I also have Ehlers-Danlos
Syndrome
and
Mast
Cell
Activation
Syndrome
. I am confused what symptoms are connected with Hypothyroidism and what can be attributed to other conditions. Thank you
I also have Ehlers-Danlos
Syndrome
and
Mast
Cell
Activation
Syndrome
. I am confused what symptoms are connected with Hypothyroidism and what can be attributed to other conditions. Thank you
Vallinkinpark
in
Thyroid UK
2 years ago
Low folate struggling to walk
Good evening my folate vit d is low I am struggling to walk 😪 I have horrific joint muscles pain shake weakness I have pin needle type pain in my legs all over my body I am struggling to walk to toilet been stuck in bed for weeks i also have pots
mast
cell
activation
syndrome
.
Good evening my folate vit d is low I am struggling to walk 😪 I have horrific joint muscles pain shake weakness I have pin needle type pain in my legs all over my body I am struggling to walk to toilet been stuck in bed for weeks i also have pots
mast
cell
activation
syndrome
.
Merkat90
in
Pernicious Anaemia Society
1 year ago
Supplement overkill?
Hello, after my cancelled egg collection I am now going privately. During this time I’ve read ‘it starts with the egg’ and as I am 33 with an AFC of 4 and AMH of 3. something I started taking everything! Now I’m worried it is a bit overkill and also it’s really expensive. I know it’s hard for someone
Hello, after my cancelled egg collection I am now going privately. During this time I’ve read ‘it starts with the egg’ and as I am 33 with an AFC of 4 and AMH of 3. something I started taking everything! Now I’m worried it is a bit overkill and also it’s really expensive. I know it’s hard for someone
LauraKate30
in
Fertility Network UK
15 days ago
Aleve use for pain other than pmr
I have found the occasional use of an Aleve helps so much with pain when I am decreasing the prednisone. Most of my pain comes from my back fractures. As I reduce the pred. My back aches get worse. Does anyone know why an Aleve would be worse for me than some of the meds they suggest that have much
I have found the occasional use of an Aleve helps so much with pain when I am decreasing the prednisone. Most of my pain comes from my back fractures. As I reduce the pred. My back aches get worse. Does anyone know why an Aleve would be worse for me than some of the meds they suggest that have much
Linny3
in
PMRGCAuk
22 days ago
First night on Buprenorphine
So today I took 0.2 mg of Buprenorphine, thinking it was better to start low. The effect was incredible. My legs didn't move at all. In fact, the effect was so effective that I even got scared. My body was so relaxed. I got a little anxious that I may not wake up if I felt sleep. I layed there amazed
So today I took 0.2 mg of Buprenorphine, thinking it was better to start low. The effect was incredible. My legs didn't move at all. In fact, the effect was so effective that I even got scared. My body was so relaxed. I got a little anxious that I may not wake up if I felt sleep. I layed there amazed
Anthas
in
Restless Legs Syndrome
1 month ago
What to expect, medication etc - First appointment since Systemic Sclerosis diagnosis
Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this
Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this
Jules1821
in
Scleroderma & Raynaud's UK (SRUK)
1 month ago
question
I started tapering prednisone 10 one day 5 the next for 4 weeks starting 25/6 and since Thursday all of my symptoms are back well my pleural effusion is definitely back with a vengeance. Could this be down to the reduction? Sorry my heads all over the place, my breathing hurts and I’m in so much pain
I started tapering prednisone 10 one day 5 the next for 4 weeks starting 25/6 and since Thursday all of my symptoms are back well my pleural effusion is definitely back with a vengeance. Could this be down to the reduction? Sorry my heads all over the place, my breathing hurts and I’m in so much pain
Numptybrain
in
PMRGCAuk
1 month ago
buprenorphine Patches For Fibromyalgia Head Hair Loss
Been on buprenorphine patches & have noticed head hair loss.Now changing from 5mg to 15 mg shortly as 5 mg doesn't work on me nor does 10mg. Not clumps of hair more like loose strands of hair. Anyone else having these issues etc I'm male by the way. Kindest Regards
Been on buprenorphine patches & have noticed head hair loss.Now changing from 5mg to 15 mg shortly as 5 mg doesn't work on me nor does 10mg. Not clumps of hair more like loose strands of hair. Anyone else having these issues etc I'm male by the way. Kindest Regards
Fibroguy66
in
Fibromyalgia Action UK
2 months ago
Suppressed TSH on combined therapy
Is there data/medical papers I can give my doctor as to why T3 is suppressed on combination therapy? I have tried looking at the Nice guidelines but they all seem against using combination therapy.Thanks Sue
Is there data/medical papers I can give my doctor as to why T3 is suppressed on combination therapy? I have tried looking at the Nice guidelines but they all seem against using combination therapy.Thanks Sue
redhead41
in
Thyroid UK
2 months ago
diagnosis finally
Apparently I have Pelvic Congestion Syndrome !!!! I’ll take it, if I can get some help 🙄 Anyone else have this? Shceduled for a Caudal epidural anytime soon.
Apparently I have Pelvic Congestion Syndrome !!!! I’ll take it, if I can get some help 🙄 Anyone else have this? Shceduled for a Caudal epidural anytime soon.
Aprilbaby24
in
Pelvic Pain Support Network
2 months ago
Interesting research
Just saw this interesting research on DNA cause of inflammatory bowel disease, but they say it might also apply to autoimmune liver diseases. https://amp.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway They hope treatments will be in use within 5
Just saw this interesting research on DNA cause of inflammatory bowel disease, but they say it might also apply to autoimmune liver diseases. https://amp.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway They hope treatments will be in use within 5
Readlots
in
British Liver Trust
2 months ago
Low folate vitamin d
cell
activation
syndrome
and pots also just quick question anyone else has had low folate had these symptoms I can't walk on my feet it agony.
cell
activation
syndrome
and pots also just quick question anyone else has had low folate had these symptoms I can't walk on my feet it agony.
Merkat90
in
The UK Mastocytosis Support Group
1 year ago
Aside from easing motor symptoms of Parkinson’s disease, deep brain stimulation (DBS) may also slow disease progression
https://parkinsonsnewstoday.com/news/dbs-reduces-toxic-clumping-parkinsons-rat-brain-cells-study/
https://parkinsonsnewstoday.com/news/dbs-reduces-toxic-clumping-parkinsons-rat-brain-cells-study/
Farooqji
in
Cure Parkinson's
3 months ago
COVID between cycles and impact on egg quality ... Any knowledge/ experience?
Hey all - so I was meant to start my next cycle of IVF in 3 weeks time. I have been so healthy; haven't caught a cold or even a sniffle for the past 12 months but have somehow managed to pick up COVID from somewhere. I've had 3 vaccines and COVID once before but am still testing very positive 6 days
Hey all - so I was meant to start my next cycle of IVF in 3 weeks time. I have been so healthy; haven't caught a cold or even a sniffle for the past 12 months but have somehow managed to pick up COVID from somewhere. I've had 3 vaccines and COVID once before but am still testing very positive 6 days
Rubylou01
in
Fertility Network UK
3 months ago
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