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Guidance for RLS
Hi Everyone, I'm new to this forum and am so glad to have found you. I have suffered with RLS for years, and in the past year, it's become pretty severe. I get VERY little sleep. Currently, I'm taking Gabapentin and Magnesium Glycinate, but neither are helping--yet. I did take Carbidopa-Levodopa for
Hi Everyone, I'm new to this forum and am so glad to have found you. I have suffered with RLS for years, and in the past year, it's become pretty severe. I get VERY little sleep. Currently, I'm taking Gabapentin and Magnesium Glycinate, but neither are helping--yet. I did take Carbidopa-Levodopa for
PinkTLC
in
Restless Legs Syndrome
9 months ago
Next NoSilverBullet Zoom webinar on Monday 15th of May: "What do successful people do to slow down PD progression?” by Dr. Laurie Mischley
I am delighted to announce that our next NoSilverBullet Zoom session will be taking place at 7.30pm London time on Monday, the 15th of May 2023. Dr. Laurie Mischley will be talking to us about "What do successful people do to slow down PD progression?” Attendees are encouraged to generate a PRO-PD
I am delighted to announce that our next NoSilverBullet Zoom session will be taking place at 7.30pm London time on Monday, the 15th of May 2023. Dr. Laurie Mischley will be talking to us about "What do successful people do to slow down PD progression?” Attendees are encouraged to generate a PRO-PD
Michel0220
in
Cure Parkinson's
1 year ago
Help with Gabapentin please
Hello, I'm wandering if I need to up my ropinerole again during the day? I until the last few days have been coping, taking 1mg ropinerole at 6pm and 2 gabapentin at around 8pm before I go to bed sometimes a bit later depending what time I get home, no later than 10pm tho. The problem is last few days
Hello, I'm wandering if I need to up my ropinerole again during the day? I until the last few days have been coping, taking 1mg ropinerole at 6pm and 2 gabapentin at around 8pm before I go to bed sometimes a bit later depending what time I get home, no later than 10pm tho. The problem is last few days
Cobobay
in
Restless Legs Syndrome
9 months ago
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notalgia paresthetica
I have vasculitis, MPA, and have developed nostalgia paresthetica, (my own diagnosis). Intense itching on my back is driving me crazy. This has been going on for a few months. Does anyone have experience with this and advice to share??
I have vasculitis, MPA, and have developed nostalgia paresthetica, (my own diagnosis). Intense itching on my back is driving me crazy. This has been going on for a few months. Does anyone have experience with this and advice to share??
GinnyMa
in
Vasculitis UK
9 months ago
Peripheral neuropathy
I have peripheral neuropathy in my legs and feet, the last few days, pain in my left foot has been severe enough to keep me awake at nights, I also have OAB which affects sleep...feel I've had no rest for a bit. Can anyone advice? Doc doesn't seem able to help, I've reach the end of my tether!!!
I have peripheral neuropathy in my legs and feet, the last few days, pain in my left foot has been severe enough to keep me awake at nights, I also have OAB which affects sleep...feel I've had no rest for a bit. Can anyone advice? Doc doesn't seem able to help, I've reach the end of my tether!!!
foxglove
in
Pain Concern
9 months ago
lipodystrophy and Parkinson’s?
does anyone else have lipodystrophy associated with their Parkinson’s? I’ve had Parkinson’s for more than 12 years and it has mostly been well controlled by steadily increasing levels of medication. Recently, however, I’ve been losing weight and body fat consistent with generalised Lipodystrophy. I
does anyone else have lipodystrophy associated with their Parkinson’s? I’ve had Parkinson’s for more than 12 years and it has mostly been well controlled by steadily increasing levels of medication. Recently, however, I’ve been losing weight and body fat consistent with generalised Lipodystrophy. I
Cv235
in
Cure Parkinson's
9 months ago
Scientific opinion on the tolerable upper intake level for vitamin B6
The new scientific opinion (EFSA) revised in Europe the Tolerable Upper Intake Level
(UL) for vitamin B6 of 12.5 mg/day
for adults (including pregnant and lactating women), down from the previous UL of 30 mg/day set in 2000. For infants and children the ULs are: 2.2-2.5 mg/day (4-11 months), 3.2
The new scientific opinion (EFSA) revised in Europe the Tolerable Upper Intake Level
(UL) for vitamin B6 of 12.5 mg/day
for adults (including pregnant and lactating women), down from the previous UL of 30 mg/day set in 2000. For infants and children the ULs are: 2.2-2.5 mg/day (4-11 months), 3.2
Esperanto
in
Cure Parkinson's
9 months ago
Feeling a little disillusioned about TTFD and High Dose Thiamine (HDT):
My opinion: You can watch videos that say other B1’s are better; they are more powerful; they cross the BBB; etc. but you cannot find much (if any) info on long-term positive results [success stories]. Best to leave Benfothiamine, TTFD, Sulbutiamine, etc. alone and stay with what works for other people
My opinion: You can watch videos that say other B1’s are better; they are more powerful; they cross the BBB; etc. but you cannot find much (if any) info on long-term positive results [success stories]. Best to leave Benfothiamine, TTFD, Sulbutiamine, etc. alone and stay with what works for other people
Gcf51
in
Cure Parkinson's
9 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hidden
in
Neuropathy Support
9 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hidden
in
Neuropathy Support
9 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did and to ring your dr also, he said he is not looking at someone's sob letter. He has taken me off temgesic as well
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did and to ring your dr also, he said he is not looking at someone's sob letter. He has taken me off temgesic as well
Hidden
in
Restless Legs Syndrome
9 months ago
Losing Hope of a good life
Sitting here jerking away, feels like someone has a cattle prod stuck in my thigh and sending shocks down my leg..my foot is twisting up....I'm about done with this. My husband may as well go and find someone else that can give him a happy retirement...the last 2 days I have had to drug myself up to
Sitting here jerking away, feels like someone has a cattle prod stuck in my thigh and sending shocks down my leg..my foot is twisting up....I'm about done with this. My husband may as well go and find someone else that can give him a happy retirement...the last 2 days I have had to drug myself up to
Hidden
in
Restless Legs Syndrome
9 months ago
v non-invasive treatment may offer significant relief to and restore gait function in patients with neurological disorders
To this end, the clinical researchers from Japan recruited twenty-three patients with PD or Parkinson’s syndrome. All study participants were randomly assigned to receive either the active treatment or a “sham” treatment that mimics the active treatment but does not offer any therapeutic benefit.
To this end, the clinical researchers from Japan recruited twenty-three patients with PD or Parkinson’s syndrome. All study participants were randomly assigned to receive either the active treatment or a “sham” treatment that mimics the active treatment but does not offer any therapeutic benefit.
Farooqji
in
Cure Parkinson's
9 months ago
tramadol
I was on tramadol for at least 10 years----100 mg. then my doc took me off because a neurologist put me on Clonazepam for REM/SBD (rapid eye movement sleep behavior disorder.) But I was also getting cervical and lumbar rhizotomies...and still do every 12-14 months or so. I am now working with the VA
I was on tramadol for at least 10 years----100 mg. then my doc took me off because a neurologist put me on Clonazepam for REM/SBD (rapid eye movement sleep behavior disorder.) But I was also getting cervical and lumbar rhizotomies...and still do every 12-14 months or so. I am now working with the VA
Shadowperson
in
Pain Concern
9 months ago
Low B6... taking a complex with pyridoxine which obviously doesn't suit
Back to the search for the best B complex (Thorne being elusive at the moment and didn't do particularly well at keeping my B12 up)... one which contains pyridoxal 5' phosphate Does anyone rate Igennus Super B Complex? All suggestions welcome 🤗
Back to the search for the best B complex (Thorne being elusive at the moment and didn't do particularly well at keeping my B12 up)... one which contains pyridoxal 5' phosphate Does anyone rate Igennus Super B Complex? All suggestions welcome 🤗
TiggerMe
in
Thyroid UK
9 months ago
Free auto injector : )
Hi all - I am in Germany and have a new, unused Union Medico Needle Guide Assistant with English instructions. I don't need it and don't want to just toss it. I know some of you struggle with injections and might need it. I'm happy to send free to anyone in Europe or the UK. Please just let me know
Hi all - I am in Germany and have a new, unused Union Medico Needle Guide Assistant with English instructions. I don't need it and don't want to just toss it. I know some of you struggle with injections and might need it. I'm happy to send free to anyone in Europe or the UK. Please just let me know
SigNi
in
Pernicious Anaemia Society
9 months ago
Neuropathy AFTER Chemo: Treatment?
I had 14 docetaxel treatments a little over a year ago with no neuropathy. Approximately two months after completing these 14 treatments, I began to have peripheral neuropathy in my fingertips and a small amount in my toes. The neuropathy is worse at night and has continued (at about the same severity
I had 14 docetaxel treatments a little over a year ago with no neuropathy. Approximately two months after completing these 14 treatments, I began to have peripheral neuropathy in my fingertips and a small amount in my toes. The neuropathy is worse at night and has continued (at about the same severity
VLBIV
in
Advanced Prostate Cancer
10 months ago
Hypnotherapy for Primary Raynaud's
Hello, there are some websites that state that Hypnotherapy can help Raynaud's. There are some Hypnotherapists that offer treatments for Raynaud's which are very expensive, £400 for just 2 sessions, https://www.emmaarmes.com/fees I would want hypnotherapy to stop my central nervous system from overreacting
Hello, there are some websites that state that Hypnotherapy can help Raynaud's. There are some Hypnotherapists that offer treatments for Raynaud's which are very expensive, £400 for just 2 sessions, https://www.emmaarmes.com/fees I would want hypnotherapy to stop my central nervous system from overreacting
mike444
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
TSH increased but no medication change
Hi, My recent blood tests showed my TSH has increased from 1.12 to 2.4 and I haven’t changed anything. Is there a reason this would happen or does it just fluctuate? I have been eating a lot of cruciferous everyday. Would that have an impact? My FT4 has remained pretty constant.
Hi, My recent blood tests showed my TSH has increased from 1.12 to 2.4 and I haven’t changed anything. Is there a reason this would happen or does it just fluctuate? I have been eating a lot of cruciferous everyday. Would that have an impact? My FT4 has remained pretty constant.
Emj001
in
Thyroid UK
10 months ago
Could these symptoms be CANVAS
Diagnosed with Large fibre polyneuropathy in 2021 but symptoms have progressed more towards CANVAS. Is anyone familiar with it? Stands for Cerebellar Ataxia (CA), Neuropathy (N) and Vestibular Areflexia (VA). There is a genetic RFC1 type and one without a genetic type. I have positive Rhomberg and loss
Diagnosed with Large fibre polyneuropathy in 2021 but symptoms have progressed more towards CANVAS. Is anyone familiar with it? Stands for Cerebellar Ataxia (CA), Neuropathy (N) and Vestibular Areflexia (VA). There is a genetic RFC1 type and one without a genetic type. I have positive Rhomberg and loss
rideabike
in
Ataxia UK
10 months ago
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