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Experiences with
Mast cell activation syndrome (MCAS)
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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
6 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
13 days ago
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
3 months ago
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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
1 year 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
*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
10 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
Light compression gloves
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Manzana1
in
NRAS
5 hours ago
Update
I’m now down to 15mg and my stomach is still swollen but cause seems to be Serositis. My pleural effusion are 200/300mls left side and zero right side with now minimal around pericardial so steroids are definitely working indicating cause is definitely autoimmune and possibly PMR . I still don’t feel
I’m now down to 15mg and my stomach is still swollen but cause seems to be Serositis. My pleural effusion are 200/300mls left side and zero right side with now minimal around pericardial so steroids are definitely working indicating cause is definitely autoimmune and possibly PMR . I still don’t feel
Numptybrain
in
PMRGCAuk
4 days ago
Anesthesia and PD
I’m planning on having Morton’s neuroma surgery in a few weeks, unless I chicken out! I’m concerned about any negative effects because of anesthesia . I’m going to check to see if doing some type of block instead of General, is a possibility. Has anyone had that operation, or have experience with different
I’m planning on having Morton’s neuroma surgery in a few weeks, unless I chicken out! I’m concerned about any negative effects because of anesthesia . I’m going to check to see if doing some type of block instead of General, is a possibility. Has anyone had that operation, or have experience with different
Ob6842
in
Cure Parkinson's
13 days ago
Worrying blood test results ...
Hello, This is my first post - last week I noticed some quite dark patches under both arms. Was seen by GP in an hour ... gave me Clotrimazole Cream which has reduced the tone of my skin. GP said it was acanthosis nigricans... ,?? Sent me for bloods including LFT and various tests FBC. These came
Hello, This is my first post - last week I noticed some quite dark patches under both arms. Was seen by GP in an hour ... gave me Clotrimazole Cream which has reduced the tone of my skin. GP said it was acanthosis nigricans... ,?? Sent me for bloods including LFT and various tests FBC. These came
Apollo14lmp
in
British Liver Trust
13 days ago
GLP1-R agonist improves Parkinson disease symptoms
"Lixisenatide can cross the blood-brain barrier and is known to have neuroprotective properties in https://www.ccjm.org/page/mds-2023/glp1-r-agonist-parkinson#:~:text=Lixisenatide%20can%20cross%20the%20blood,%2C%20University%20Hospital%20Bordeaux%2C%20France.
"Lixisenatide can cross the blood-brain barrier and is known to have neuroprotective properties in https://www.ccjm.org/page/mds-2023/glp1-r-agonist-parkinson#:~:text=Lixisenatide%20can%20cross%20the%20blood,%2C%20University%20Hospital%20Bordeaux%2C%20France.
Gcf51
in
Cure Parkinson's
19 days ago
Sjogrens Syndrome
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Juanburr1950
in
Scleroderma & Raynaud's UK (SRUK)
29 days ago
Urgent Synarel - help!
Hi everyone I have just had my final scan today, before ER on Monday. I take my trigger shot tomorrow- and im sure the Dr said to me to take my last Synarel/nafarelin nasal spray as usual (I have been taking it twice each nostril, 9am and 9pm) However, the paper instructions she has written down state
Hi everyone I have just had my final scan today, before ER on Monday. I take my trigger shot tomorrow- and im sure the Dr said to me to take my last Synarel/nafarelin nasal spray as usual (I have been taking it twice each nostril, 9am and 9pm) However, the paper instructions she has written down state
MollyHar
in
Fertility Network UK
1 month ago
Informing DVLA
Hi all. You've been super helpful before so wonder if you can help with another question. One for the UK based folk. Question about informing the DVLA of a TBI. Has anyone navigated this process please? I know I need to inform them and have looked at their form. I'm not currently well enough to drive
Hi all. You've been super helpful before so wonder if you can help with another question. One for the UK based folk. Question about informing the DVLA of a TBI. Has anyone navigated this process please? I know I need to inform them and have looked at their form. I'm not currently well enough to drive
Ideogram
in
Headway
1 month ago
Clonidine - success with RLS anyone?
Evening team I have a query. As some of you may remember I was prescribed Buprenorphine two years ago by a neurologist for my restless limbs. I have a feeling I may have asked this question before, maybe not in one of my posts, (can't remember!) Does anyone out there take Clonidine for RLS? if
Evening team I have a query. As some of you may remember I was prescribed Buprenorphine two years ago by a neurologist for my restless limbs. I have a feeling I may have asked this question before, maybe not in one of my posts, (can't remember!) Does anyone out there take Clonidine for RLS? if
Heatherandgorse
in
Restless Legs Syndrome
1 month ago
Efficacy of Trihexyphenidyl on Apraxia of Eyelid Opening in Parkinsonism: A Case Report
Apraxia of eyelid opening (AEO) is occasionally seen in Parkinson’s disease (PD) or related diseases. However, many clinicians have trouble with the management of AEO by Parkinsonism. The following link mentions a case of apraxia of eyelids opening in PD patient which was successfully treated with the
Apraxia of eyelid opening (AEO) is occasionally seen in Parkinson’s disease (PD) or related diseases. However, many clinicians have trouble with the management of AEO by Parkinsonism. The following link mentions a case of apraxia of eyelids opening in PD patient which was successfully treated with the
Farooqji
in
Cure Parkinson's
1 month ago
first scan anxiety! Please say something positive
i have my first scan today (13wks 1 day), i am very anxious.. i keep thinking ridiculous things like they are going to say there is no baby etc. and am horrified thinking about birth defects and chromosomal abnormalities.. any help/advice?
i have my first scan today (13wks 1 day), i am very anxious.. i keep thinking ridiculous things like they are going to say there is no baby etc. and am horrified thinking about birth defects and chromosomal abnormalities.. any help/advice?
QueenKoala
in
Pregnancy and Parenting Support
2 months ago
I did PGT-A testing, could my unborn baby have down's syndrome?
I am currently 18 weeks 5 days pregnant following a successful IVF cycle. I undertook PGT-A testing as I am 41 years old. I got a call today from my midwife advising that my blood test has come back with a higher chance result for down's syndrome. I thought that as PGT-A testing was done and showed
I am currently 18 weeks 5 days pregnant following a successful IVF cycle. I undertook PGT-A testing as I am 41 years old. I got a call today from my midwife advising that my blood test has come back with a higher chance result for down's syndrome. I thought that as PGT-A testing was done and showed
Systema23
in
Pregnancy and Parenting Support
2 months ago
A useful option-gastro resistant empty capsules
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
Freshairfiend
in
PMRGCAuk
2 months ago
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