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My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
Desperate100
in
Restless Legs Syndrome
2 years ago
listening to music has transformed my sleep
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
LoulouPet
in
Restless Legs Syndrome
2 years ago
Go back on Pramaprexol?
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
SteveWess
in
Restless Legs Syndrome
2 years ago
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FUS technical explanation
I'll attach few pictures about FUS and also my EEG. See the 1st picture. The loss of dopamine in BG produces electrical signals disturbances in the Thalamus which are causing the PD symptoms. The dopamine is coming from Substantia Niagra (naturally) or carbidova/levodoba (artificially). When the BG
I'll attach few pictures about FUS and also my EEG. See the 1st picture. The loss of dopamine in BG produces electrical signals disturbances in the Thalamus which are causing the PD symptoms. The dopamine is coming from Substantia Niagra (naturally) or carbidova/levodoba (artificially). When the BG
ion_ion
in
Cure Parkinson's
2 years ago
buprenorphine for RLS
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
RC723
in
Restless Legs Syndrome
2 years ago
Clonazepam
Hi I'm still having a rough time with RLS despite my usual gabapentin and temgesic. My doctor has suggested trying clonazepam in combination with my existing medication and I wondered what experience my fellow sufferers had with it. I've tried other benzo sleeping tablets in the past but the RL always
Hi I'm still having a rough time with RLS despite my usual gabapentin and temgesic. My doctor has suggested trying clonazepam in combination with my existing medication and I wondered what experience my fellow sufferers had with it. I've tried other benzo sleeping tablets in the past but the RL always
puzzler1
in
Restless Legs Syndrome
2 years ago
Update shingles vaccination before start JAK inhibitor
Thanks all…found all the information I need re shingles vaccination. Now aware there’s a non live one, Shingrix, but as I’m 62 it may take a bit of support (or saving up!) to get it.Only another 8 years to wait! Why isn’t this offered as routine for us folks….know it doesn’t provide full immunity..what
Thanks all…found all the information I need re shingles vaccination. Now aware there’s a non live one, Shingrix, but as I’m 62 it may take a bit of support (or saving up!) to get it.Only another 8 years to wait! Why isn’t this offered as routine for us folks….know it doesn’t provide full immunity..what
Taraheart
in
NRAS
2 years ago
UTIs & D mannose
I'm currently having recurring infections- 2 different abx in just a few weeks. Due to see yet another gynae in early September re bladder prolapse. Tried D mannose before without success but maybe not taking enough?? Should it be 3 tabs every 3 hours- for how long? Thanks again as usual, Valerie
I'm currently having recurring infections- 2 different abx in just a few weeks. Due to see yet another gynae in early September re bladder prolapse. Tried D mannose before without success but maybe not taking enough?? Should it be 3 tabs every 3 hours- for how long? Thanks again as usual, Valerie
Portobello
in
PMRGCAuk
2 years ago
Bizarre aid in relieving my RLS symptoms
I have suffered severely from RLS for most of my life (I'm now 66). For the last few years I have been prescribed Ropinirole and Pregabalin, although the Pregabalin was stopped at the end of 2021. My symptoms have been unchanged for many years - sensations in legs, arms, shoulders and wrists; generally
I have suffered severely from RLS for most of my life (I'm now 66). For the last few years I have been prescribed Ropinirole and Pregabalin, although the Pregabalin was stopped at the end of 2021. My symptoms have been unchanged for many years - sensations in legs, arms, shoulders and wrists; generally
Niksles
in
Restless Legs Syndrome
2 years ago
Post vaccine neuralgic amyotrophy
Has anyone experienced this or have any knowledge of this condition? Further to the 4th Pfizer vaccine in early March, within hours of receiving the jab, both legs became extremely painful with electric shock-type shooting pains from my hips to my feet, along with losing strength in my legs I became
Has anyone experienced this or have any knowledge of this condition? Further to the 4th Pfizer vaccine in early March, within hours of receiving the jab, both legs became extremely painful with electric shock-type shooting pains from my hips to my feet, along with losing strength in my legs I became
Horsewhisper
in
PMRGCAuk
2 years ago
Advice moving forward:
I currently take 300mg pregabalin but it only is about 60% effective, some nights it’s not effective at all, I also take cocodamol and sometimes clonazepam. I had already been on roprinirole and managed to wean myself off. I need some advice moving forward… I saw Professor Walker about a year ago -
I currently take 300mg pregabalin but it only is about 60% effective, some nights it’s not effective at all, I also take cocodamol and sometimes clonazepam. I had already been on roprinirole and managed to wean myself off. I need some advice moving forward… I saw Professor Walker about a year ago -
Drls
in
Restless Legs Syndrome
2 years ago
Mistaken Diagnosis
Mistaken Diagnosis. I had an EEG today because I had an appointment with a neurologist and I told her I have had auras for a few years but I have had epilepsy all my life so I have a lot of questions I am not sure where to start. How do I tell if I have epilepsy or not I just know I had encephalitis
Mistaken Diagnosis. I had an EEG today because I had an appointment with a neurologist and I told her I have had auras for a few years but I have had epilepsy all my life so I have a lot of questions I am not sure where to start. How do I tell if I have epilepsy or not I just know I had encephalitis
QueensWay67
in
Neuropathy Support
2 years ago
MRI and EEG confirm no stroke! 😮💨
My Jeff is still pretty groggy, however, he’s definitely more lucid. He has gotten a little confused, but is about 90% back to normal, but that’s when he’s awake. He constantly nods off and still sleeps a lot. After an MRI and an EEG, they were able to officially rule out stroke. Jeff had the wires
My Jeff is still pretty groggy, however, he’s definitely more lucid. He has gotten a little confused, but is about 90% back to normal, but that’s when he’s awake. He constantly nods off and still sleeps a lot. After an MRI and an EEG, they were able to officially rule out stroke. Jeff had the wires
Pancake_Lefse
in
Advanced Prostate Cancer
2 years ago
RLS Meds & Post-Surgical complications
I had a knee replacement a year ago. It went well, except my doctor took me off my Tramadol, 100 mg/3 per day, while keeping me on my 100 mg, 3x/day Pregabalin—it works well together. Instead he had me on 5 mg of Oxycodone every 4 hours. He thought the Oxycodone would an effective substitute for the
I had a knee replacement a year ago. It went well, except my doctor took me off my Tramadol, 100 mg/3 per day, while keeping me on my 100 mg, 3x/day Pregabalin—it works well together. Instead he had me on 5 mg of Oxycodone every 4 hours. He thought the Oxycodone would an effective substitute for the
Bganim1947
in
Restless Legs Syndrome
2 years ago
Leg Claudication
Does anyone else have issues with leg pain when walking. I am trying to walk a mile a day and always have leg pain. I suspect peripheral artery disease. Is Peripheral artery disease a part of GCA/PMR?
Does anyone else have issues with leg pain when walking. I am trying to walk a mile a day and always have leg pain. I suspect peripheral artery disease. Is Peripheral artery disease a part of GCA/PMR?
phebamom
in
PMRGCAuk
2 years ago
Off Baricitinib and knee replacement
Hi I'm feeling tearful. I've been off Baricitinib for one week yesterday as I'm having a total knee replacement next Wednesday 13th (I had my left knee and hip replaced in 2018 before being diagnosed) and had to use walking sticks since. Already my feet and ankles are swollen and it's painful to
Hi I'm feeling tearful. I've been off Baricitinib for one week yesterday as I'm having a total knee replacement next Wednesday 13th (I had my left knee and hip replaced in 2018 before being diagnosed) and had to use walking sticks since. Already my feet and ankles are swollen and it's painful to
Mozart150
in
NRAS
2 years ago
Internal Tremors - a question
As many of you know, I have had a somewhat chequered journey with my AF and treatments but currently am happy with my status quo ie: Pacemaker which seems to help control AF and certainly lessens episodes, unless I have an infection. Very recently, I have developed what I can only describe as internal
As many of you know, I have had a somewhat chequered journey with my AF and treatments but currently am happy with my status quo ie: Pacemaker which seems to help control AF and certainly lessens episodes, unless I have an infection. Very recently, I have developed what I can only describe as internal
CDreamer
in
Atrial Fibrillation Support
2 years ago
Rituximab and tetanus (etc.)
This is to all my fellow immune suppressed folks about rituximab. I've been unable to find solid information, and my consultants aren't sure, so wondered if anyone here knows. Does rituximab impact our tetanus jabs and similar? I was up to date on all my boosters, but got bit by a tick on Saturday (think
This is to all my fellow immune suppressed folks about rituximab. I've been unable to find solid information, and my consultants aren't sure, so wondered if anyone here knows. Does rituximab impact our tetanus jabs and similar? I was up to date on all my boosters, but got bit by a tick on Saturday (think
Grizzly-bear
in
Vasculitis UK
2 years ago
Pramipexole, restless legs and tummy ache
I am cutting down on pramipexole. And I really appreciate the advice and help him by members of this group. Does anybody else find that when their legs are particularly restless they also have tummy ache?
I am cutting down on pramipexole. And I really appreciate the advice and help him by members of this group. Does anybody else find that when their legs are particularly restless they also have tummy ache?
RestlessMe
in
Restless Legs Syndrome
2 years ago
Ropinirole as needed?
Hello everyone. I have taken low dose Ropinirole on occasion (.25mg) and alternate it with Gabapentin (300 mg) for medium RLS symptoms and to help with sleep. I do this for fear of Augmentation on Ropinirole and loss of efficacy with Gabapentin over time. Has anyone here have had experience with this
Hello everyone. I have taken low dose Ropinirole on occasion (.25mg) and alternate it with Gabapentin (300 mg) for medium RLS symptoms and to help with sleep. I do this for fear of Augmentation on Ropinirole and loss of efficacy with Gabapentin over time. Has anyone here have had experience with this
zeusop
in
Restless Legs Syndrome
2 years ago
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