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Systemic mastocytosis
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Systemic Mastocytosis and Ehlers Danlos Syndrome hypermobility. Does anyone else have this combination of diagnoses
Subsequently, at a different hospital, they confirmed that I had the indicative genetic mutation and a bone marrow biopsy showed that I have
Systemic
Mastocytosis
(Indolent). I also have Ehlers Danlos Syndrome hypermobility. There seems to be an association between these two conditions.
Subsequently, at a different hospital, they confirmed that I had the indicative genetic mutation and a bone marrow biopsy showed that I have
Systemic
Mastocytosis
(Indolent). I also have Ehlers Danlos Syndrome hypermobility. There seems to be an association between these two conditions.
Marcilhac
in
The UK Mastocytosis Support Group
7 months ago
advice?
I'm Polish American though, and was diagnosed with indolent
systemic
mastocytosis
in the states, when I was visiting my parents for the summer two years ago. I have struggled a lot with the diagnosis, and started getting symptoms shortly after, (maybe from excessive stress?).
I'm Polish American though, and was diagnosed with indolent
systemic
mastocytosis
in the states, when I was visiting my parents for the summer two years ago. I have struggled a lot with the diagnosis, and started getting symptoms shortly after, (maybe from excessive stress?).
meerkatsara
in
The UK Mastocytosis Support Group
8 months ago
Does the pill/coil halt progression?
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Sophhh
in
Endometriosis UK
10 months ago
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Implant or Injections
I am 21 diagnosed endo laparoscopy last year & had hormonal coil which is due for removal in December (I think it was containing my pain but now it isn’t)My pain is increasing dramatically so consultant has recommended implant or injections when coil is removed. I’m wondering how I am supposed to decide
I am 21 diagnosed endo laparoscopy last year & had hormonal coil which is due for removal in December (I think it was containing my pain but now it isn’t)My pain is increasing dramatically so consultant has recommended implant or injections when coil is removed. I’m wondering how I am supposed to decide
BT20
in
Endometriosis UK
1 year ago
Have a diagnosis of Systemic Mastocytosis? Make your voice heard!
For those of you WITHOUT a confirmed diagnosis of
systemic
mastocytosis
, please know that we hope there will be similar surveys in future to address your needs.
For those of you WITHOUT a confirmed diagnosis of
systemic
mastocytosis
, please know that we hope there will be similar surveys in future to address your needs.
Jess-UKMasto
Partner
in
The UK Mastocytosis Support Group
2 years ago
Ketotifen supply issue
Hi - I'm Kay and I have indolent
systemic
mastocytosis
. I have just been phoning round pharmacies (without success), looking for Ketotifen 1mg tablets as there seem to be supply problems yet again.
Hi - I'm Kay and I have indolent
systemic
mastocytosis
. I have just been phoning round pharmacies (without success), looking for Ketotifen 1mg tablets as there seem to be supply problems yet again.
Kay-UKMasto
Ambassador
in
The UK Mastocytosis Support Group
2 years ago
Lemrac66.
And
systemic
mastocytosis
. For mylo i on no medication. For mastocytosis i taking 3 cetriizine .and 1 Lotradine a day. Have heard nothing from guys since 13 july was supposed to have appointmen in 5 weeks. My back aches .as my shoulder hands knee feet . Just had lung infection.
And
systemic
mastocytosis
. For mylo i on no medication. For mastocytosis i taking 3 cetriizine .and 1 Lotradine a day. Have heard nothing from guys since 13 july was supposed to have appointmen in 5 weeks. My back aches .as my shoulder hands knee feet . Just had lung infection.
Lemrac66
in
The UK Mastocytosis Support Group
2 years ago
what am I able ( if anything to claim for)
diagnosed with
systemic
mastocytosis
and myloplastic syndrom. pluss other health conditions was wondering if I could claim pip thank you for your time
diagnosed with
systemic
mastocytosis
and myloplastic syndrom. pluss other health conditions was wondering if I could claim pip thank you for your time
Lemrac66
in
The UK Mastocytosis Support Group
2 years ago
Swollen feet.joint pain.itching .don't sleep.
Aggressive
systemic
Mastocytosis
. With fibrosis.. Got to see hospital in few weeks time.very little as been told to me. Red brown rash on legs..itching.
Aggressive
systemic
Mastocytosis
. With fibrosis.. Got to see hospital in few weeks time.very little as been told to me. Red brown rash on legs..itching.
Lemrac66
in
The UK Mastocytosis Support Group
2 years ago
Changes In Immune System
After living with UP for around 30yrs and
Systemic
Mastocytosis
diagnosed 13yrs ago. I have had sepsis 3 times. The 1st time due to an abscess on my ovary and infection due to coil contraceptive. The 2nd time no cause was found.
After living with UP for around 30yrs and
Systemic
Mastocytosis
diagnosed 13yrs ago. I have had sepsis 3 times. The 1st time due to an abscess on my ovary and infection due to coil contraceptive. The 2nd time no cause was found.
Susaphine
in
The UK Mastocytosis Support Group
2 years ago
Mastocytosis
I hope other people with
systemic
mastocytosis
reply to your posting, so that you realise you are not alone. All the best.
I hope other people with
systemic
mastocytosis
reply to your posting, so that you realise you are not alone. All the best.
Bluebird_77
in
The UK Mastocytosis Support Group
2 years ago
Cutaneous or Systemic - help please?!
I have some pretty horrible symptoms which make daily tasks a nightmare at times which are mostly relatable to
systemic
mastocytosis
. Am I trying to find a link to something which just isn't true?
I have some pretty horrible symptoms which make daily tasks a nightmare at times which are mostly relatable to
systemic
mastocytosis
. Am I trying to find a link to something which just isn't true?
HelenW1988
in
The UK Mastocytosis Support Group
2 years ago
Et + Cutaneous Mastocytosis
Does anyone here having ET and cutaneous
Mastocytosis
or
systemic
Mastocytosis
? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.
Does anyone here having ET and cutaneous
Mastocytosis
or
systemic
Mastocytosis
? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.
Ryna-Ally
in
MPN Voice
3 years ago
Can anyone relate?
I myself was diagnosed with
Systemic
Mastocytosis
over 10 years ago. I am pasting below the email my daughter sent to our surgery. She asked them if she could have an ANA & ENA and tryptase blood test but they said the ANA&ENA was not needed and they were not sure about the tryptase.
I myself was diagnosed with
Systemic
Mastocytosis
over 10 years ago. I am pasting below the email my daughter sent to our surgery. She asked them if she could have an ANA & ENA and tryptase blood test but they said the ANA&ENA was not needed and they were not sure about the tryptase.
Cricri70
in
The UK Mastocytosis Support Group
3 years ago
Feeling a little bit lost
Hi all. First time posting and I'm not really sure what I want to get out of this post I just feel so lost and confused. I have been living with fibromyalgia for 3 years diagnosed but probably for many years previous so chronic pain is no new thing for me. I went on the hormonal coil in January 2020
Hi all. First time posting and I'm not really sure what I want to get out of this post I just feel so lost and confused. I have been living with fibromyalgia for 3 years diagnosed but probably for many years previous so chronic pain is no new thing for me. I went on the hormonal coil in January 2020
Bookobssessed
in
Endometriosis UK
3 years ago
Mini Pill vs Hormonal Coil
When will the mini pull become affective. I’ve been on the mini pill for about 3 1/2 months after being discharged from hospital and I’m bleeding everyday. I’ve been passing large clumps of tissue and clots the size of my hand. The pain is still there and I’m constantly exhausted as I’ve been bleeding
When will the mini pull become affective. I’ve been on the mini pill for about 3 1/2 months after being discharged from hospital and I’m bleeding everyday. I’ve been passing large clumps of tissue and clots the size of my hand. The pain is still there and I’m constantly exhausted as I’ve been bleeding
Littlebug77
in
Endometriosis UK
3 years ago
Is this normal?
Hey everyone. My doctor has said after speaking with a gynaecologist that I have endo - I haven’t had a scan and finding it impossible to get one. I’ve been in agony for two weeks now, started during my period and still here afterwards - at first the pain was in the middle and now it’s moved to the right
Hey everyone. My doctor has said after speaking with a gynaecologist that I have endo - I haven’t had a scan and finding it impossible to get one. I’ve been in agony for two weeks now, started during my period and still here afterwards - at first the pain was in the middle and now it’s moved to the right
abbiecx_
in
Endometriosis UK
3 years ago
Struggling with symptoms
I am new to the group but not new to
systemic
mastocytosis
. My skin is fairly stable although am covered with the mastocytosis rash it is generally ok. However my gastric problems are escalating at the moment.
I am new to the group but not new to
systemic
mastocytosis
. My skin is fairly stable although am covered with the mastocytosis rash it is generally ok. However my gastric problems are escalating at the moment.
Mothertay
in
The UK Mastocytosis Support Group
3 years ago
Thoughts on hormonal coil?
Hello again everyone! Some TMI HERE - I'm physically and mentally exhausted currently with my pain and endometriosis symptoms. I had a coil put in 5 weeks ago after a failed lap to remove some of the endometriosis tissue (if mild - turns out my case was too severe to be treated and also there were other
Hello again everyone! Some TMI HERE - I'm physically and mentally exhausted currently with my pain and endometriosis symptoms. I had a coil put in 5 weeks ago after a failed lap to remove some of the endometriosis tissue (if mild - turns out my case was too severe to be treated and also there were other
Shels97
in
Endometriosis UK
3 years ago
Pegasys- smouldering systemic mastocytosis
I was told I had to get injections to slow down mast cell production. When I got the prescription it said a form of chemotherapy? Anyone in my position? Not sure why if mastocytosis is not cancerous at my category
I was told I had to get injections to slow down mast cell production. When I got the prescription it said a form of chemotherapy? Anyone in my position? Not sure why if mastocytosis is not cancerous at my category
Holiday1111
in
MPN Voice
4 years ago
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