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Mast cell activation syndrome (MCAS)
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Surely not Augmentation already!
Hi again everyone, I've been on ropinirole now for two weeks and I've gone from being able to sit at work most of the morning/day without standing to work, to some symptoms in the mornings; to yesterday, standing most of the time I was at work! I had RL all afternoon as well and nothing seemed to control
Hi again everyone, I've been on ropinirole now for two weeks and I've gone from being able to sit at work most of the morning/day without standing to work, to some symptoms in the mornings; to yesterday, standing most of the time I was at work! I had RL all afternoon as well and nothing seemed to control
restlessstoz
in
Restless Legs Syndrome
5 years ago
Need advice on controlling RLS post -op
Can a neurologist help an RLS patient post -op from a total knee replacement surgery? Anesthesia and the leg trauma aggravated RLS 5 weeks! Now I need a revision knee surgery and dread the sleepless nights while it's supposed to be critical rest and healing time. I am using 600 mg Gabapentin along with
Can a neurologist help an RLS patient post -op from a total knee replacement surgery? Anesthesia and the leg trauma aggravated RLS 5 weeks! Now I need a revision knee surgery and dread the sleepless nights while it's supposed to be critical rest and healing time. I am using 600 mg Gabapentin along with
Hidden
in
Restless Legs Syndrome
5 years ago
Rytary and reduced absorption due to food
* Green Tea and Rytary* I noticed that if I take Green Tea (Matcha and Sencha mix) with Rytary, there is poor absorption. Any such experiences? ——- Those of you who are on Rytary, can you please share the experience with food. How do you manage, and how do you space it. I just started Rytary last
* Green Tea and Rytary* I noticed that if I take Green Tea (Matcha and Sencha mix) with Rytary, there is poor absorption. Any such experiences? ——- Those of you who are on Rytary, can you please share the experience with food. How do you manage, and how do you space it. I just started Rytary last
Hidden
in
Cure Parkinson's
5 years ago
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bones in leg feel like ice
I suffer from leg pain . I have it off and on for many years , and most days in ,ild form. I feel like ,the bones in my leg have turned to solid ice. but drs dont know the cause Amybody have the answer. the pain is excruciating. . Some times use hot packs or really hot baths.. but effect of treatment
I suffer from leg pain . I have it off and on for many years , and most days in ,ild form. I feel like ,the bones in my leg have turned to solid ice. but drs dont know the cause Amybody have the answer. the pain is excruciating. . Some times use hot packs or really hot baths.. but effect of treatment
913001
in
NRAS
5 years ago
POST BMT 1-Year & 7 Months, BOY OH BOY!!!
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
NMMP
in
CLL Support
5 years ago
Sad news - Sheila Turner
It is with great sadness that we have to inform you that Sheila Turner, founder of Thyroid Patient Advocacy (TPA), has died at the age of 81. Sheila founded TPA in order to help patients who did not resolve all of their symptoms on levothyroxine. She was a great advocate for NDT for thyroid patients
It is with great sadness that we have to inform you that Sheila Turner, founder of Thyroid Patient Advocacy (TPA), has died at the age of 81. Sheila founded TPA in order to help patients who did not resolve all of their symptoms on levothyroxine. She was a great advocate for NDT for thyroid patients
lynmynott
Thyroid UK
in
Thyroid UK
5 years ago
How can I raise my T4 levels?
Okay my doctor did bloodwork over a year ago and the TSH came back at 2.676 range 0.550-4.780 T4 - 2.6 range 4.5-10.9. So she tried to put me on Levo that made me feel like crap. So i researched and said I wanted NDT. So I am taking NP Thyroid now 60mg. I felt that wasn't doing enough so I added Thyriod
Okay my doctor did bloodwork over a year ago and the TSH came back at 2.676 range 0.550-4.780 T4 - 2.6 range 4.5-10.9. So she tried to put me on Levo that made me feel like crap. So i researched and said I wanted NDT. So I am taking NP Thyroid now 60mg. I felt that wasn't doing enough so I added Thyriod
ASauer91
in
Thyroid UK
5 years ago
TROUBLE, TROUBLE , TROUBLE.
I have RLS, insomnia ,and several other chronic problems.. I have had several recent sleep studies and I am slated for a c-pap machine. I see a pulmonary sleep specialist . He wants me off the ropinirole and clonazepam I take for RLS , I want to get off them too. He does not give any medication to ease
I have RLS, insomnia ,and several other chronic problems.. I have had several recent sleep studies and I am slated for a c-pap machine. I see a pulmonary sleep specialist . He wants me off the ropinirole and clonazepam I take for RLS , I want to get off them too. He does not give any medication to ease
sweetiepye
in
Restless Legs Syndrome
5 years ago
Tortured by a Butterfly -- Dermatology and extreme sun reactions
Hi Guys, Got my Rheumatology letter yesterday, which threw me in multiple directions (and upset me about the breast explant situation again -- but I'll save that for another day). Because forefront on my mind is my Dermatology appt this afternoon. Yesterday, I provoked 2 bright red, painful burns
Hi Guys, Got my Rheumatology letter yesterday, which threw me in multiple directions (and upset me about the breast explant situation again -- but I'll save that for another day). Because forefront on my mind is my Dermatology appt this afternoon. Yesterday, I provoked 2 bright red, painful burns
panda2
in
LUPUS UK
5 years ago
Neurobechets
Hi guys, a few months ago I was admitted to hospital with neurobechets (where the bechets affects your brain and brain stem) that was sorted and I’ve been fine for a couple months, but today I’ve felt the exact same way expect the pain isn’t in my head it’s in my neck, but still feeling the same symptoms
Hi guys, a few months ago I was admitted to hospital with neurobechets (where the bechets affects your brain and brain stem) that was sorted and I’ve been fine for a couple months, but today I’ve felt the exact same way expect the pain isn’t in my head it’s in my neck, but still feeling the same symptoms
Katebbb
in
Behçet's UK
5 years ago
Costantini, Naviaux: chronic fatigue
Metabolic features of chronic fatigue syndrome. Naviaux RK, et al. PNAS 2016 https://www.ncbi.nlm.nih.gov/pubmed/27573827 Compare essay by Dr. Naviaux with essays by A. Costantini regarding fatigue that occurs in many illnesses. For examples, try google search: a costantini thiamine fatigue.
Metabolic features of chronic fatigue syndrome. Naviaux RK, et al. PNAS 2016 https://www.ncbi.nlm.nih.gov/pubmed/27573827 Compare essay by Dr. Naviaux with essays by A. Costantini regarding fatigue that occurs in many illnesses. For examples, try google search: a costantini thiamine fatigue.
aspergerian13
in
Cure Parkinson's
5 years ago
My Solution for Restless Legs/Body Syndrome
I first had RLS following knee replacement surgery in September 2010. Over the years since this has worsened and can affect whole body. I have tried many medications without complete success reaching Ropinerole 5mg 4+ times a day and experiencing consequent augmentation. Through being infected with a
I first had RLS following knee replacement surgery in September 2010. Over the years since this has worsened and can affect whole body. I have tried many medications without complete success reaching Ropinerole 5mg 4+ times a day and experiencing consequent augmentation. Through being infected with a
Hidden
in
Restless Legs Syndrome
5 years ago
Preparation for Endocrinologist Appointment
Hello, I was diagnosed in February after telling my GP for 3 + years something was wrong. Anyway i finally have an Endocrinologist appt in 3 weeks. So my question is : Looking at the results below is there anything I should be expecting or pointing out myself? I really want to be prepared so that
Hello, I was diagnosed in February after telling my GP for 3 + years something was wrong. Anyway i finally have an Endocrinologist appt in 3 weeks. So my question is : Looking at the results below is there anything I should be expecting or pointing out myself? I really want to be prepared so that
Peacefull
in
Thyroid UK
5 years ago
Anybody advise, recommend, website/ supplier to order syringes, needles etc for self med. b12?
Given a pack of 10 B12 ampoules, and seen all the advice re two needle sizes ( for withdrawing b12, then injecting), suggested 2 ml syringe, even if 1 ml b12, swabs, even ampoule breaker. But connections to Amazon webpages no longer working , so can’t see specific recommendations or even suppliers’ names
Given a pack of 10 B12 ampoules, and seen all the advice re two needle sizes ( for withdrawing b12, then injecting), suggested 2 ml syringe, even if 1 ml b12, swabs, even ampoule breaker. But connections to Amazon webpages no longer working , so can’t see specific recommendations or even suppliers’ names
Judithdalston
in
Pernicious Anaemia Society
5 years ago
Thank God! Natural Supplements Making RLS Much More Manageable!
Nearly two years ago my RLS intensified beyond just the horribly annoying need to move my legs while sitting or trying to sleep. Suddenly I was suffering with sensations of pressure, heat, popping, crackling, and shooting pain in my legs and feet. Severe cramps in both legs and feet every morning usually
Nearly two years ago my RLS intensified beyond just the horribly annoying need to move my legs while sitting or trying to sleep. Suddenly I was suffering with sensations of pressure, heat, popping, crackling, and shooting pain in my legs and feet. Severe cramps in both legs and feet every morning usually
Write4u
in
Restless Legs Syndrome
5 years ago
Would like to talk people in my situation of coming off antipressants just for help. Anyone else feeling isolated?
I am pregnant with my first chils at 17 weeks, my GP has refused to give me any help and support of coming off my antipressants and her words 'I can't help you, you chose to get pregnant, theres nothing you can take and I wouldn't risk it if I were you or you will miscarry, have a baby with cleft palate
I am pregnant with my first chils at 17 weeks, my GP has refused to give me any help and support of coming off my antipressants and her words 'I can't help you, you chose to get pregnant, theres nothing you can take and I wouldn't risk it if I were you or you will miscarry, have a baby with cleft palate
starreen12
in
Pregnancy and Parenting Support
5 years ago
Switching from Ropinirole to Mirapexin.
I am currently taking 2.5mg of Ropinirole a night for severe Rls. Because of my symptoms my GP is changing me to Mirapexin. He has put me on a dose of 1 Tablet at night of 0. 008. I am trying ir tonight but I'm concerned this is is no way equivalent dose of ropinirole. Because I was splitting my dose
I am currently taking 2.5mg of Ropinirole a night for severe Rls. Because of my symptoms my GP is changing me to Mirapexin. He has put me on a dose of 1 Tablet at night of 0. 008. I am trying ir tonight but I'm concerned this is is no way equivalent dose of ropinirole. Because I was splitting my dose
Hannahb42
in
Restless Legs Syndrome
5 years ago
New (not great) experience.
Hi, Woke up at 6 this morning in AF. Took 200mg of flecainide. (PIP). At 8 back in what seems nsr but pulse at 125bpm. I've never experienced this before. My normal pulse rate is around 65. Wondering if I should call 111 or wait for an hour or so. (been at 125 for 30 minuts already). Bit worried - any
Hi, Woke up at 6 this morning in AF. Took 200mg of flecainide. (PIP). At 8 back in what seems nsr but pulse at 125bpm. I've never experienced this before. My normal pulse rate is around 65. Wondering if I should call 111 or wait for an hour or so. (been at 125 for 30 minuts already). Bit worried - any
Graham194
in
AF Association
5 years ago
Severe painful dry eyes. Diagnosed with Meibomian gland dysfunction.
I am a vegetarian and thinking of consuming Flaxseed oil on a daily basis. Is okay to do so? I still take Levothyroxine and have to try and manage it by using lubricating eye drops and hot compresses. But every few days I still get gritty dry eyes, red and painful. I read somewhere that consuming Flaxseed
I am a vegetarian and thinking of consuming Flaxseed oil on a daily basis. Is okay to do so? I still take Levothyroxine and have to try and manage it by using lubricating eye drops and hot compresses. But every few days I still get gritty dry eyes, red and painful. I read somewhere that consuming Flaxseed
Peony88
in
Thyroid UK
5 years ago
Cpap for sleep apnea
My mum has rls and has been on lots of medicine to control it. It work until augmentation but this time gabapentin was not working. However at the same time she had her results from her sleep test and was diagnosed with moderate sleep apnea and the hospital gave her a cpap machine. The doctor said it
My mum has rls and has been on lots of medicine to control it. It work until augmentation but this time gabapentin was not working. However at the same time she had her results from her sleep test and was diagnosed with moderate sleep apnea and the hospital gave her a cpap machine. The doctor said it
Bejwo50
in
Restless Legs Syndrome
5 years ago
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