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Mast cell activation syndrome (MCAS)
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Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Akita1963
in
Anxiety and Depression Support
3 years ago
In a panic! Has anyone heard of these?
After a few years of heavy bleeds, now under control with the pill,this past few weeks I had symptoms of stabbing pain (nearly fainted twice) in my pelvis and a very achy back I went for a private scan. NHS so busy atm and I was torturing myself. So the sonographer report states 2 possible causes. Degenerating
After a few years of heavy bleeds, now under control with the pill,this past few weeks I had symptoms of stabbing pain (nearly fainted twice) in my pelvis and a very achy back I went for a private scan. NHS so busy atm and I was torturing myself. So the sonographer report states 2 possible causes. Degenerating
Shammy716
in
Endometriosis UK
3 years ago
At my wits end
I am from NZ and have been desperate with my RLS also for months, sometimes not getting to sleep till 4.30am!! I finally went back to my Dr saying something had to be done as I couldn’t carry on with no sleep. I’ve been on 1-2 Madopar for years but it just isn’t working now. As well as Madopar, I
I am from NZ and have been desperate with my RLS also for months, sometimes not getting to sleep till 4.30am!! I finally went back to my Dr saying something had to be done as I couldn’t carry on with no sleep. I’ve been on 1-2 Madopar for years but it just isn’t working now. As well as Madopar, I
Dunedinite
in
Restless Legs Syndrome
3 years ago
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Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
Second set of test results any advice on what to do next please 😔
Hi, ive had another load of blood tests. The Gp was only willing to test TSH and FT4 level and serum thyroid peroxidase Antibody concentration☹ TSH IS 5.2 (0.27-4.2) previously 4.3 (date 4/3) FT4 is 12.5 (no ranges were given for this, asked but no one knew 🙄) previously-13.4 (date 4/3) SERUM TPA
Hi, ive had another load of blood tests. The Gp was only willing to test TSH and FT4 level and serum thyroid peroxidase Antibody concentration☹ TSH IS 5.2 (0.27-4.2) previously 4.3 (date 4/3) FT4 is 12.5 (no ranges were given for this, asked but no one knew 🙄) previously-13.4 (date 4/3) SERUM TPA
Loonyloon
in
Thyroid UK
3 years ago
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets?
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Yamaha1871
in
ITP Support Association
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
Constant Calves twitching for 9 years - anyone else have this?
I never connected the restless legs and constant calves twitching with the zoloft I started 9 1/2 years ago. I had been on impramine and dispramine for 20 years before the switch. I did not have any leg problems on them. Anyone else have constant movement in their calves?
I never connected the restless legs and constant calves twitching with the zoloft I started 9 1/2 years ago. I had been on impramine and dispramine for 20 years before the switch. I did not have any leg problems on them. Anyone else have constant movement in their calves?
Basilanna
in
Restless Legs Syndrome
3 years ago
2 nights with no restless legs
After suffering with severe RLS for the last 6 years (I'm 22) I have finally been referred to a neurologist! He was fantastic 👏 He has started me on Gabapentin 300mg at night. second night in and NO restless legs. He is also wanting to do an MRI to see if there is anything that could explain my rls
After suffering with severe RLS for the last 6 years (I'm 22) I have finally been referred to a neurologist! He was fantastic 👏 He has started me on Gabapentin 300mg at night. second night in and NO restless legs. He is also wanting to do an MRI to see if there is anything that could explain my rls
Jade1998
in
Restless Legs Syndrome
3 years ago
HELP: First ever IVF advice - i am already giving up
I have Pcos and ttc since 2019. I got pregnant quickly the first time but I had a mmc. My problem is anovulatory cycles. In the last 6 months we tried Clomid which helped me ovulate but I am still not pregnant. In March I was referred to Assisted Conception Unit in my local hospital and things are moving
I have Pcos and ttc since 2019. I got pregnant quickly the first time but I had a mmc. My problem is anovulatory cycles. In the last 6 months we tried Clomid which helped me ovulate but I am still not pregnant. In March I was referred to Assisted Conception Unit in my local hospital and things are moving
FrancyItaly
in
Fertility Network UK
3 years ago
Weird cycles normal after failed ivf?
I'm having weird cycles since my first failed ivf a couple of months back. Cycles are usually about 26 days. 1st cycle was 31 days but I didn't ovulate. I'm now on day 14, seemed to be getting ready to ovulate, lots of ewcm, ovary pain etc. but this morning had lots of brown discharge mixed in with
I'm having weird cycles since my first failed ivf a couple of months back. Cycles are usually about 26 days. 1st cycle was 31 days but I didn't ovulate. I'm now on day 14, seemed to be getting ready to ovulate, lots of ewcm, ovary pain etc. but this morning had lots of brown discharge mixed in with
river242
in
Fertility Network UK
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
My experience with medically prescribed vaping for RLS
I have had RLS since my 20's and I am now 72. I have avoided taking dopamine agonists and other RLS medications for fear of augmentation. My chosen path is an anti-inflammatory diet, supplements, healthy lifestyle and so far I do manage to live a reasonable life. In the past 2 years I have embraced
I have had RLS since my 20's and I am now 72. I have avoided taking dopamine agonists and other RLS medications for fear of augmentation. My chosen path is an anti-inflammatory diet, supplements, healthy lifestyle and so far I do manage to live a reasonable life. In the past 2 years I have embraced
Goldy700
in
Restless Legs Syndrome
3 years ago
Husband Update
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
TM76
in
MPN Voice
3 years ago
AZ second jab - preparation
Hi all, Im waiting on my second AZ jab. It should be soon. I had my fiirst jab on a Sat, had a flare on the Sunday, felt like I never had a pain in my life on the Monday and was back to 'normal' on the Monday, stiff/sore in the mornings!! I never took anything beforehand like paracetamol or aspirin
Hi all, Im waiting on my second AZ jab. It should be soon. I had my fiirst jab on a Sat, had a flare on the Sunday, felt like I never had a pain in my life on the Monday and was back to 'normal' on the Monday, stiff/sore in the mornings!! I never took anything beforehand like paracetamol or aspirin
lkcreedon
in
PMRGCAuk
3 years ago
How my restless legs have resolved
Hi everyone. I'll try and be add brief as I can. Hisory: diabetic , sleep apnea (history of smoking heroin ) Basically when i was smoking heroin I would sleep like a baby but back in the day when I was using I would also cease use of heroin easily too. But that is when I would suffer quiet severely
Hi everyone. I'll try and be add brief as I can. Hisory: diabetic , sleep apnea (history of smoking heroin ) Basically when i was smoking heroin I would sleep like a baby but back in the day when I was using I would also cease use of heroin easily too. But that is when I would suffer quiet severely
biggurs
in
Restless Legs Syndrome
3 years ago
Supplements to help with DAWS
Has anyone had success with supplements to help repair dopamine damage from DAWS? These are supplements I found from research. Not entirely sure which are most appropriate. Dopa Maxx: https://www.integrativepsychiatry.net/shop/ip-formulas/dopa-maxx-dopamine-supplement/ L-Theanine: https://www.amazon.com
Has anyone had success with supplements to help repair dopamine damage from DAWS? These are supplements I found from research. Not entirely sure which are most appropriate. Dopa Maxx: https://www.integrativepsychiatry.net/shop/ip-formulas/dopa-maxx-dopamine-supplement/ L-Theanine: https://www.amazon.com
Discopage
in
Restless Legs Syndrome
3 years ago
Why use Progynova from day 20 of previous cycle (ahead of short protocol IVF cycle)?
Hello Friends, My clinic has asked me to take Progynova from day 20 on the previous cycle ahead of my (short antagonist) IVF cycle. I have read about progynova and understand it thickens the lining and it is mostly given during the IVF cycle to help the lining develop. ...My lining is working great,
Hello Friends, My clinic has asked me to take Progynova from day 20 on the previous cycle ahead of my (short antagonist) IVF cycle. I have read about progynova and understand it thickens the lining and it is mostly given during the IVF cycle to help the lining develop. ...My lining is working great,
Carelia
in
Fertility Network UK
3 years ago
Weening off oxycodone targinact
Iam trying to wean off oxycodone targinact20mg twice a day iam now taking 10 g at night and 5mg in the morning but have awfull withdraw symptons and very depressed as the medi ation was not lasting the 12hrs my rls has come back awful,and having no sleep feeling as if life n ot worth living should
Iam trying to wean off oxycodone targinact20mg twice a day iam now taking 10 g at night and 5mg in the morning but have awfull withdraw symptons and very depressed as the medi ation was not lasting the 12hrs my rls has come back awful,and having no sleep feeling as if life n ot worth living should
Hidden
in
Restless Legs Syndrome
3 years ago
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