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Experiences with
Sjogren-Larsson syndrome
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Fatigue
Hi I have been suffering from depression, mood disorder and chronic fatigue. I did blood tests lately but all is fine so Dr confirmed that its fibro. I sleep 8 to 9 hours but I wake up tired like I want to sleep again. This happens on a daily basis and is affecting my routine because I don't have the
Hi I have been suffering from depression, mood disorder and chronic fatigue. I did blood tests lately but all is fine so Dr confirmed that its fibro. I sleep 8 to 9 hours but I wake up tired like I want to sleep again. This happens on a daily basis and is affecting my routine because I don't have the
Annalisea
in
Fibromyalgia Action UK
3 years ago
Flecainide with Afib and LBBB?
Hello, In a bid to stop me going into Afib my electrophysiologist has stopped my very low dose of bisop for what I think says Diltiazen ER and flecainide 100mg bd. I was previously told by my cardiologist I should not take flecainide due to my LBBB. I did mention this to the EP, who said my heart function
Hello, In a bid to stop me going into Afib my electrophysiologist has stopped my very low dose of bisop for what I think says Diltiazen ER and flecainide 100mg bd. I was previously told by my cardiologist I should not take flecainide due to my LBBB. I did mention this to the EP, who said my heart function
IsobelBrown54
in
Atrial Fibrillation Support
3 years ago
A bit lost and looking for help
Hello everyone, I am not new here but have not posted before. Firstly, thanks for this great resource I dip in and out all the time. A little background, roughly 6 years ago diagnosed borderline hypo, been taking 50 levo since then with blood test indicating no increase needed. Roll on to last Spring
Hello everyone, I am not new here but have not posted before. Firstly, thanks for this great resource I dip in and out all the time. A little background, roughly 6 years ago diagnosed borderline hypo, been taking 50 levo since then with blood test indicating no increase needed. Roll on to last Spring
Pippydoo
in
Thyroid UK
3 years ago
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Venetoclax and Stelara
Hello everyone, hope all is well? Just putting it out there if anyone has been on Venetoclax for their CLL and Stelara for Ulcerative Colitis at the sametime? Or can anyone recommend medication for Ulcerative Colitis while taking Venetoclax?
Hello everyone, hope all is well? Just putting it out there if anyone has been on Venetoclax for their CLL and Stelara for Ulcerative Colitis at the sametime? Or can anyone recommend medication for Ulcerative Colitis while taking Venetoclax?
Driverps1
in
CLL Support
3 years ago
12 week scan. High risk for Edward's and Patau's syndromes. Any positive stories?
Hello, I had my 12 week scan (at 13 weeks) on Monday. The Nuchal Translucency was high 6.4 mm and combined with the blood test our risk of Down Syndrome is low 1:10000 but our risk of Patau's or Edward's is as high as it could be 1:2. I am 37 years old, so I realise I am at increased risk. Has anyone
Hello, I had my 12 week scan (at 13 weeks) on Monday. The Nuchal Translucency was high 6.4 mm and combined with the blood test our risk of Down Syndrome is low 1:10000 but our risk of Patau's or Edward's is as high as it could be 1:2. I am 37 years old, so I realise I am at increased risk. Has anyone
AracLl
in
Fertility Network UK
3 years ago
Eustachian tube disfunction and Sjogren's? Anyone have this and any useful tips on dealing with it?
Hello All, wondering if you can help me? I have SLE & Sjogren's. Have had the dry eyes for several years and now in the past few months developed a dry mouth and blocked left ear & nostril. Also have tingling & numbness on the left side of the face which is being investigated - maybe trigreminal neuralgia
Hello All, wondering if you can help me? I have SLE & Sjogren's. Have had the dry eyes for several years and now in the past few months developed a dry mouth and blocked left ear & nostril. Also have tingling & numbness on the left side of the face which is being investigated - maybe trigreminal neuralgia
gemim
in
LUPUS UK
3 years ago
New to forum
New here! I get extremely restless achy heavy legs in the evenings particularly if I am tired. The only thing I have found that eases it is going to my bed and lying down. Is this a circulation thing more than restless legs I wonder?
New here! I get extremely restless achy heavy legs in the evenings particularly if I am tired. The only thing I have found that eases it is going to my bed and lying down. Is this a circulation thing more than restless legs I wonder?
Hellsbells12345
in
Restless Legs Syndrome
3 years ago
8+4 Late Dose of Progynova
Hi everyone, I'm currently 8 weeks 4 days pregnant, and due to my incompetent GP surgery mucking up my prescription, I have taken my progynova nearly 6 hours late today. Has anyone else done this before and their pregnancy has continued ok? I contacted my clinic, but their response was "We cannot say
Hi everyone, I'm currently 8 weeks 4 days pregnant, and due to my incompetent GP surgery mucking up my prescription, I have taken my progynova nearly 6 hours late today. Has anyone else done this before and their pregnancy has continued ok? I contacted my clinic, but their response was "We cannot say
JustJennay28
in
Fertility Network UK
3 years ago
Why the moaning about Ropinirole?
Hiya, can I, politely, obviously- ask why people object so much to Ropinerole. For me it is a lifesaver. Literally cannot live without it. I know that I am addicted but so are people to Diet Coke and so on and so forth, there are many other medications with side effects which are necessary to maintain
Hiya, can I, politely, obviously- ask why people object so much to Ropinerole. For me it is a lifesaver. Literally cannot live without it. I know that I am addicted but so are people to Diet Coke and so on and so forth, there are many other medications with side effects which are necessary to maintain
Dane74
in
Restless Legs Syndrome
3 years ago
Are joint hypermobility syndrome and ehlers-danlos syndrome the same?
Question for those of you who might have both fibro and joint hypermobility! I was asked by someone to clarify if I had ehlers-danlos syndrome and wasn't quite sure and Google isn't helping me! A rheumatologist diagnosed me with joint hypermobility ages ago at the same time as fibro and didn't really
Question for those of you who might have both fibro and joint hypermobility! I was asked by someone to clarify if I had ehlers-danlos syndrome and wasn't quite sure and Google isn't helping me! A rheumatologist diagnosed me with joint hypermobility ages ago at the same time as fibro and didn't really
Lizardelle
in
Fibromyalgia Action UK
3 years ago
Dry ears, eyes etc and Buckthorn Oil Capsules
I came across an article recently for dry eyes, ears etc. Has anyone taken Buckthorn Oil capsules for this? I have just purchased Omega7 which contains [i]Omega 3, 6, 7, 9 and Vit A (beta carotene) which maintains normal structure and function of the skin and mucous membranes, such as the eyes,
I came across an article recently for dry eyes, ears etc. Has anyone taken Buckthorn Oil capsules for this? I have just purchased Omega7 which contains [i]Omega 3, 6, 7, 9 and Vit A (beta carotene) which maintains normal structure and function of the skin and mucous membranes, such as the eyes,
Moggy1234
in
Pernicious Anaemia Society
3 years ago
Looks like another missed miscarriage
So today I had a private scan at 8+1. Gestational sac was normal. Baby measured 4mm with a rather large yolk sac. The flickering of the heartbeat is visible on the screen but can’t be picked up on the machine. I can already imagine the outcome, I am measuring 2 weeks behind and with IVF it is impossible
So today I had a private scan at 8+1. Gestational sac was normal. Baby measured 4mm with a rather large yolk sac. The flickering of the heartbeat is visible on the screen but can’t be picked up on the machine. I can already imagine the outcome, I am measuring 2 weeks behind and with IVF it is impossible
FrancyItaly
in
Fertility Network UK
3 years ago
ICSI: 6th cycle failed
Hello all fighters, Just received bad news again and again. Today is day 5 and none of embryos made it to blastocyst. Egg collection: 18 and only 9 were MII, unfortunately 3 fertilised and the best we got today is 1 early cavitating grade 2. I’m 42 with AMH 2.4 and FSH around 4 but eggs are of bad quality
Hello all fighters, Just received bad news again and again. Today is day 5 and none of embryos made it to blastocyst. Egg collection: 18 and only 9 were MII, unfortunately 3 fertilised and the best we got today is 1 early cavitating grade 2. I’m 42 with AMH 2.4 and FSH around 4 but eggs are of bad quality
Exclusique
in
Fertility Network UK
3 years ago
Paper on meds that help DA withdrawal
Hello, can anyone please point me to a paper that details the drugs that can assist with dopamine agonist withdrawal, so that I can share with my doctor? I am stepping down from ropinirole now (due to augmentation, of course) and it is horrible. My doctor, who doesn’t know a lot about RLS (but is open
Hello, can anyone please point me to a paper that details the drugs that can assist with dopamine agonist withdrawal, so that I can share with my doctor? I am stepping down from ropinirole now (due to augmentation, of course) and it is horrible. My doctor, who doesn’t know a lot about RLS (but is open
Frustrated-RLS
in
Restless Legs Syndrome
3 years ago
When to take Questran or Colestid powder
I am taking one sachet of Questran or Colestid powder (containing colestyramine or colestipol hydrochloride respectively) per day to control suspected bile acid malabsorption (I have a cooperative doctor - but I haven't been tested for BAM) and therefore IBS D - and with some success. My question is,
I am taking one sachet of Questran or Colestid powder (containing colestyramine or colestipol hydrochloride respectively) per day to control suspected bile acid malabsorption (I have a cooperative doctor - but I haven't been tested for BAM) and therefore IBS D - and with some success. My question is,
merve1
in
IBS Network
3 years ago
Supplement to restore joint health
I’ve been buying this for my dog for quite a while for his joints and the webpage says it is for humans too so I thought I would try it. https://wedeliver.nz/products/efac I have been taking it at 3 per day for a while and I swear it is helping. So if you have sore achy body it might be worth a try
I’ve been buying this for my dog for quite a while for his joints and the webpage says it is for humans too so I thought I would try it. https://wedeliver.nz/products/efac I have been taking it at 3 per day for a while and I swear it is helping. So if you have sore achy body it might be worth a try
LAJ12345
in
Cure Parkinson's
3 years ago
Meds and rls
Was on pramipexole for over 15 years was up to 3mg. Have slowly tapered off of it and switched to a lower dose of requip hopefully don't have to deal with as many side effects mostly hypersexuality. My rls symptoms seem to be starting earlier in the day by 3 in the afternoon. Is it worth it to start
Was on pramipexole for over 15 years was up to 3mg. Have slowly tapered off of it and switched to a lower dose of requip hopefully don't have to deal with as many side effects mostly hypersexuality. My rls symptoms seem to be starting earlier in the day by 3 in the afternoon. Is it worth it to start
Usedtocook
in
Restless Legs Syndrome
3 years ago
Hyperreflexia
I would love to hear others' experience with hyperreflexia as result of PA. I have periods (often in the last days before my injection), when I get low-level random muscle twitches, mostly in my arms and back, then they subside. I have been found to be hyperreflexive in reflex tests since my PA diagnosis
I would love to hear others' experience with hyperreflexia as result of PA. I have periods (often in the last days before my injection), when I get low-level random muscle twitches, mostly in my arms and back, then they subside. I have been found to be hyperreflexive in reflex tests since my PA diagnosis
Bellmore2089
in
Pernicious Anaemia Society
3 years ago
Gabapentin not working as yet
Hi Ive been on gabapentin for 5 weeks now. I previously posted saying my doctor had prescribed 100mgs 3 times daily. I was advised on forum as I thought, that this dose was useless, and I'd be better taking at night and upping dose gradually. So I'm now to to 900mgs at night but still not seeing
Hi Ive been on gabapentin for 5 weeks now. I previously posted saying my doctor had prescribed 100mgs 3 times daily. I was advised on forum as I thought, that this dose was useless, and I'd be better taking at night and upping dose gradually. So I'm now to to 900mgs at night but still not seeing
Lizzybuz27
in
Restless Legs Syndrome
3 years ago
Transvaginal ultrasound scan
Hello, I had a transvaginal ultrasound scan today to look at my lining, general health and follicles today in preparation for my next ivf cycle. I had the scan on day 2, when the report has come back the report states multiple follicles! The ivf Centre want to know the amount and cannot believe it wasn
Hello, I had a transvaginal ultrasound scan today to look at my lining, general health and follicles today in preparation for my next ivf cycle. I had the scan on day 2, when the report has come back the report states multiple follicles! The ivf Centre want to know the amount and cannot believe it wasn
Tilly8135
in
Fertility Network UK
3 years ago
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