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Angelman syndrome

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Angelman syndrome

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2,877 public posts

22pagents22

Dear everyone is it just me or the media and government talking about economically inactive people feel they are talking about disabled people in chronic pain etc getting the persecution again with pip renewal awards cut or refused and being told nothing wrong with you go get a job etc ie 2014 change
Dear everyone is it just me or the media and government talking about economically inactive people feel they are talking about disabled people in chronic pain etc getting the persecution again with pip renewal awards cut or refused and being told nothing wrong with you go get a job etc ie 2014 change
22pagets22 profile image
22pagets22
in Fibromyalgia Action UK
15 days ago

Me again

Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in the right place but you guys have always been so helpful 💕 Found out this week that the lip biopsy I had done did not have any sjorgrens syndrome showing which is what they were initially looking for, however the new rheumatologist
Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in the right place but you guys have always been so helpful 💕 Found out this week that the lip biopsy I had done did not have any sjorgrens syndrome showing which is what they were initially looking for, however the new rheumatologist
Haylz2109 profile image
Haylz2109
in LUPUS UK
22 days ago

systemic sclerosis

Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes sense! I have Sjogren's and Systemic sclerosis but all the Doctors ignore the intolerable symptom of hot and cold I suffer
Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes sense! I have Sjogren's and Systemic sclerosis but all the Doctors ignore the intolerable symptom of hot and cold I suffer
sessull profile image
sessull
in Scleroderma & Raynaud's UK (SRUK)
27 days ago
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Sore tongue

Hi folks, is a sore tongue part of UCTD? I've had sore patches (which grow and change shape, and are smooth in the middle) for some years, more on than off. I've assumed it is geographic tongue but that's supposed to be painless from what I've read. I also have a moderately dry mouth and wondering
Hi folks, is a sore tongue part of UCTD? I've had sore patches (which grow and change shape, and are smooth in the middle) for some years, more on than off. I've assumed it is geographic tongue but that's supposed to be painless from what I've read. I also have a moderately dry mouth and wondering
redmaggie profile image
redmaggie
in LUPUS UK
1 month ago

females & prednisone

does anybody notice vaginal odor while taking prednisone & methotrexate? I remember when on chemotherapy years ago I had a body odor. your thoughts? My gynecologist suggested probiotics with Lactobacillus acidophilus.
does anybody notice vaginal odor while taking prednisone & methotrexate? I remember when on chemotherapy years ago I had a body odor. your thoughts? My gynecologist suggested probiotics with Lactobacillus acidophilus.
Pass7 profile image
Pass7
in PMRGCAuk
2 months ago

LOW BETA HCG

Hi, me again!!! Iam really worrying about my HCG being low. 10dpt - 64 (4 weeks 1 day) 12dp5dt - 142 (4 weeks 3 days)  14dp5dt - 437 (4 weeks 5 days) They are more than doubling but worried they are still low. Any success stories or anything similar please?
Hi, me again!!! Iam really worrying about my HCG being low. 10dpt - 64 (4 weeks 1 day) 12dp5dt - 142 (4 weeks 3 days)  14dp5dt - 437 (4 weeks 5 days) They are more than doubling but worried they are still low. Any success stories or anything similar please?
Jess11111 profile image
Jess11111
in Fertility Network UK
2 months ago

Sjogrens

Hi All Does anyone have Sjogrens as well as RA? I have many of the symptoms of Sjogrens but I can’t see my rheumy for a while so I am self diagnosing but I’m pretty sure that’s what it is. I wondered whether anyone has found any otc remedies that help? The worst symptom at the moment is that my
Hi All Does anyone have Sjogrens as well as RA? I have many of the symptoms of Sjogrens but I can’t see my rheumy for a while so I am self diagnosing but I’m pretty sure that’s what it is. I wondered whether anyone has found any otc remedies that help? The worst symptom at the moment is that my
Bizzie profile image
Bizzie
in NRAS
2 months ago

Rasagiline – Second-Generation MAO-B Inhibitor for the Treatment of Parkinson’s Disease

According to the below article, it slows down the disease progression https://www.clinicaltrialsarena.com/projects/rasagiline-parkinsons-disease/
According to the below article, it slows down the disease progression https://www.clinicaltrialsarena.com/projects/rasagiline-parkinsons-disease/
Farooqji profile image
Farooqji
in Cure Parkinson's
2 months ago

First IVF consult advice: Very high AMH, ovarian hyperstimulation syndrome

Hi everyoneI'm looking for a bit of advice - I've got my first appointment with our IVF consultant on the 6th April. I just had my results back from my AMH test and the information package for my protocol. My AMH was 80.2 pmol/L and they're pretty sure I'll get ovarian hyperstimulation - I had horrendous
Hi everyoneI'm looking for a bit of advice - I've got my first appointment with our IVF consultant on the 6th April. I just had my results back from my AMH test and the information package for my protocol. My AMH was 80.2 pmol/L and they're pretty sure I'll get ovarian hyperstimulation - I had horrendous
Chubbstep profile image
Chubbstep
in Fertility Network UK
2 months ago

Coping strategies

I have recently had a relative that has been placed in ICU . I am finding it very stressful and worrying with all the ups and downs. Are there any tips of how to cope with the situation ?
I have recently had a relative that has been placed in ICU . I am finding it very stressful and worrying with all the ups and downs. Are there any tips of how to cope with the situation ?
Ashfilm profile image
Ashfilm
in ICUsteps
3 months ago

Advice pls- FET or endometrial testing

Hi ladies, Would appreciate your advice on my situation. Had an MMC at 7 wks in Oct 22 (4th transfer and first time I’ve ever had a positive pregnancy test). It took nearly 2 months for me to naturally have a period after. I had some miscarriage/ implantation testing with a university research clinic
Hi ladies, Would appreciate your advice on my situation. Had an MMC at 7 wks in Oct 22 (4th transfer and first time I’ve ever had a positive pregnancy test). It took nearly 2 months for me to naturally have a period after. I had some miscarriage/ implantation testing with a university research clinic
Elmo13 profile image
Elmo13
in Fertility Network UK
3 months ago

Left atrial enlargement

Hello!I was wondering if anyone has experience of this. What can be done about it, is it reversible with optimal levo? For context, I have Hashi's, I'm 51 and currently experiencing another bout of terrible anxiety ( last time was 5 years ago). Tests have discovered the enlarged LA. I don't have any
Hello!I was wondering if anyone has experience of this. What can be done about it, is it reversible with optimal levo? For context, I have Hashi's, I'm 51 and currently experiencing another bout of terrible anxiety ( last time was 5 years ago). Tests have discovered the enlarged LA. I don't have any
MPG1972 profile image
MPG1972
in Thyroid UK
3 months ago

6 weeks baby implanted on the low side of the womb

hi , I am 6 weeks pregnant, went through so much so far , started with no meds enough ( ivf abroad) , bleeding, …. I still have spotting, my doctor told me to start progynova ( estradiol) 2 times a day. I repeated hcg ( 9000 ) and done a scan . I was told I have a Subchorionic hematoma (SCH)  next to
hi , I am 6 weeks pregnant, went through so much so far , started with no meds enough ( ivf abroad) , bleeding, …. I still have spotting, my doctor told me to start progynova ( estradiol) 2 times a day. I repeated hcg ( 9000 ) and done a scan . I was told I have a Subchorionic hematoma (SCH)  next to
MariannaB profile image
MariannaB
in Fertility Network UK
4 months ago

length of time for biopsy results

Hi, had a partial lung lobectomy and lymph node removal, was told biopsy results would be back in 7-10 days. It’s now been 41 days and I’ve heard nothing. When I contact various people I’m just being told this length of timeframe is not uncommon.. this does not sound right to me… Anyone else had to wait
Hi, had a partial lung lobectomy and lymph node removal, was told biopsy results would be back in 7-10 days. It’s now been 41 days and I’ve heard nothing. When I contact various people I’m just being told this length of timeframe is not uncommon.. this does not sound right to me… Anyone else had to wait
Hidden profile image
Hidden
in Lung Conditions Community Forum
4 months ago

Surgery

I have had parkinsons for 5 years and need a hip replacement, I fear how the anesthesia will affect my symptons. I have an appointment with a new neurologist, but it's not until the end of March. My surgeon can only tell me that it's my decision,
I have had parkinsons for 5 years and need a hip replacement, I fear how the anesthesia will affect my symptons. I have an appointment with a new neurologist, but it's not until the end of March. My surgeon can only tell me that it's my decision,
davissw profile image
davissw
in Cure Parkinson's
4 months ago

Catastrophic APS

Please help!! My APS has turned catastrophi catastrophic. It has shut down my adrenal gland & now my kidneys. I started dialysis last week. They have tried plasma exchange, high dose steriods to no avail. Im still on Warfarin. Has anybody found a way to get it back under control?
Please help!! My APS has turned catastrophi catastrophic. It has shut down my adrenal gland & now my kidneys. I started dialysis last week. They have tried plasma exchange, high dose steriods to no avail. Im still on Warfarin. Has anybody found a way to get it back under control?
Lind8 profile image
Lind8
in Hughes Syndrome APS Forum
4 months ago

any experience with vitex / agnus castus / herbs? Help!

I’m in a real panic. I took the Holland and Barrett vitex/Agnus castus supplement for about a week in December (at a high dose). I immediately experienced sore boobs and my period came dramatically a week early. The two cycles after this i have not ovulated but had a period. As I’m TTC this is the
I’m in a real panic. I took the Holland and Barrett vitex/Agnus castus supplement for about a week in December (at a high dose). I immediately experienced sore boobs and my period came dramatically a week early. The two cycles after this i have not ovulated but had a period. As I’m TTC this is the
CarlottaD27 profile image
CarlottaD27
in Fertility Network UK
4 months ago

Trisomy 22 - POC result. Anybody been in same boat but eventually succeeded? Plz share

Hi ladies So my 4th MC POC was tested and result came back with trisomy 22. No ivf yet. My heart aches to read that it was defective. Good stories always make me feel positive and give me belief that I can carry on. Has anybody in this circle had same issue but eventually succeeded. Did you do
Hi ladies So my 4th MC POC was tested and result came back with trisomy 22. No ivf yet. My heart aches to read that it was defective. Good stories always make me feel positive and give me belief that I can carry on. Has anybody in this circle had same issue but eventually succeeded. Did you do
Preety1983 profile image
Preety1983
in Fertility Network UK
4 months ago

Anovulatory medicated FET success rates

Hello ivf warriors, I am having doubts before our FET. I am currently not ovulating (still breastfeeding my ivf double rainbow). Clinic is happy to induce ovulation by medication for the purposes of the transfer. I am having doubts whether there could be less chance of success given my body has not returned
Hello ivf warriors, I am having doubts before our FET. I am currently not ovulating (still breastfeeding my ivf double rainbow). Clinic is happy to induce ovulation by medication for the purposes of the transfer. I am having doubts whether there could be less chance of success given my body has not returned
pink_lemon profile image
pink_lemon
in Fertility Network UK
4 months ago

Dad admitted to ICU with Sepsis on 31/12/22

my dad was admitted to the ICU on New Year’s Eve, he’s had pneumonia, strep a and sepsis, he’s currently got the Trachi and is on the kidney filter machine. The doctors are saying that they need to sedate him 100% now so he can get the rest he needs as everything is failing on him. They’ve talked about
my dad was admitted to the ICU on New Year’s Eve, he’s had pneumonia, strep a and sepsis, he’s currently got the Trachi and is on the kidney filter machine. The doctors are saying that they need to sedate him 100% now so he can get the rest he needs as everything is failing on him. They’ve talked about
Omwils profile image
Omwils
in ICUsteps
5 months ago
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