Search
Search
About
Log in
Join
Experiences with
D-bifunctional protein (DBP) deficiency
Posts
Communities
2,097 public posts
Filter results
Insomnia
Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
carlosgarcia2048
in
Cure Parkinson's
4 months ago
AbbVie’s Produodopa approved by SMC to treat Parkinson’s disease patients in Scotland
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
Farooqji
in
Cure Parkinson's
4 months ago
Influences of sleep and the circadian rhythm on iron-status indices
I suspect few, if any, of us have ever really thought about iron tests varying by time of day. However much we understand with regard to thyroid, somehow I think most of us imagine iron as being more "bucket chemistry". But this paper might force us to re-assess! [i]
Influences of sleep and the circadian
I suspect few, if any, of us have ever really thought about iron tests varying by time of day. However much we understand with regard to thyroid, somehow I think most of us imagine iron as being more "bucket chemistry". But this paper might force us to re-assess! [i]
Influences of sleep and the circadian
helvella
Thyroid UK
in
Thyroid UK
11 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
pain?
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
ottercat
in
Cure Parkinson's
5 months ago
please share your thoughts
I am - 54 year old post-menopausal woman who has have been suffering from RLS for approximately 18 months and it is becoming more severe. I weaned myself off of Lexapro, exercise daily, have almost eliminated caffeine and sugar, take magnesium and soak my feet in a magnesium salt bath at bedtime. Most
I am - 54 year old post-menopausal woman who has have been suffering from RLS for approximately 18 months and it is becoming more severe. I weaned myself off of Lexapro, exercise daily, have almost eliminated caffeine and sugar, take magnesium and soak my feet in a magnesium salt bath at bedtime. Most
Lluvinlife
in
Restless Legs Syndrome
11 months ago
Active b12 result
Hello, so gp did my serum b12 which was 206 a few weeks ago and said he wasn't worried. I am worried because I have lots of symptoms and had a b12 deficiency a few years ago so I paid to get an active b12 test done privately (UK). Result is 47 pmol/mol. It says the cut off for a deficiency is 38, so
Hello, so gp did my serum b12 which was 206 a few weeks ago and said he wasn't worried. I am worried because I have lots of symptoms and had a b12 deficiency a few years ago so I paid to get an active b12 test done privately (UK). Result is 47 pmol/mol. It says the cut off for a deficiency is 38, so
Hullaballop
in
Pernicious Anaemia Society
11 months ago
The problematic 2nd dose of the day
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
jeeves19
in
Cure Parkinson's
5 months ago
DBS awake or under general anesthesia
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
gingerj
in
Cure Parkinson's
5 months ago
Collagen powder and increased stiffness?
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
1rocketman
in
Cure Parkinson's
5 months ago
#1 Symptom Reducer
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
staceysack
in
Cure Parkinson's
5 months ago
DBS??
I’m seriously considering DBS. Would love some feedback from people who have had it done.
I’m seriously considering DBS. Would love some feedback from people who have had it done.
CostaVal
in
Cure Parkinson's
5 months ago
addicted to C/L?
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
limcheeese22
in
Cure Parkinson's
5 months ago
DBS. Did it improve your life as much as you hoped?
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
gingerj
in
Cure Parkinson's
5 months ago
Iron - wishful thinking
If only there were an iron forum here on HealthUnlocked! There is one: [i]
Haemochromatosis Society UK
[/i] https://healthunlocked.com/haemochromatosis-uk But its last post was three months ago. And it is a very specific niche issue. (Obviously very important to those affected.) And (of course
If only there were an iron forum here on HealthUnlocked! There is one: [i]
Haemochromatosis Society UK
[/i] https://healthunlocked.com/haemochromatosis-uk But its last post was three months ago. And it is a very specific niche issue. (Obviously very important to those affected.) And (of course
helvella
Thyroid UK
in
Thyroid UK
1 year ago
Iron Levels
Hi RLS survivors So I mistakenly had my Ferratin and TST levels tested at the wrong time of the day but the readings were: Serum Ferratin level - 64ugl/L All suggestions welcome ????? Transferrin Profile serum iron levels 12umol /L Serum transferrin levels 3.06g/L Transfer in saturation level
Hi RLS survivors So I mistakenly had my Ferratin and TST levels tested at the wrong time of the day but the readings were: Serum Ferratin level - 64ugl/L All suggestions welcome ????? Transferrin Profile serum iron levels 12umol /L Serum transferrin levels 3.06g/L Transfer in saturation level
careerSquirrel
in
Restless Legs Syndrome
1 year ago
Advice on below range TSH, low ferritin, poor absorption and current dosage
Dear all, I posted some very odd results 3 months ago and have retested on your advice, twice...two months apart, with similar results. Testing using protocol advised by the group.I am still on 125 levo (eutirox) and 10ml T3 Liotir (liquid). Based in Italy. I also had symptoms of low B12 including
Dear all, I posted some very odd results 3 months ago and have retested on your advice, twice...two months apart, with similar results. Testing using protocol advised by the group.I am still on 125 levo (eutirox) and 10ml T3 Liotir (liquid). Based in Italy. I also had symptoms of low B12 including
Sandytango
in
Thyroid UK
1 year ago
I’m scheduled to have DBS surgery February 29 - if you have had DBS, is there anything you wish you‘d known beforehand?
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
Megafone
in
Cure Parkinson's
6 months ago
Various B12D/PA resources
Admin Edit: This is not an official PAS post but it does contain many resources that may be of use to members and has been pinned for that reason ___________________________________________________________________ Hi all, I had some time to spare today and thought I would write a post with a list of
Admin Edit: This is not an official PAS post but it does contain many resources that may be of use to members and has been pinned for that reason ___________________________________________________________________ Hi all, I had some time to spare today and thought I would write a post with a list of
jade_s
in
Pernicious Anaemia Society
1 year ago
Kinder , Gentler and harmless Alternative of DBS
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Farooqji
in
Cure Parkinson's
6 months ago
don’t know what’s happening
previous test 30 may 23 at 8/30 on 150 thyroxine 12 and half t3 Tsh 0.02 (0.27-4.2). T4 17.9(10.5-22) t3 4.3(3.1-6.8) Mention to the dr about what you had said about iron panel/ chronic disease,she said yes your thyroid wasn’t sure if she was doing it although she’d book me to have bloods I had already
previous test 30 may 23 at 8/30 on 150 thyroxine 12 and half t3 Tsh 0.02 (0.27-4.2). T4 17.9(10.5-22) t3 4.3(3.1-6.8) Mention to the dr about what you had said about iron panel/ chronic disease,she said yes your thyroid wasn’t sure if she was doing it although she’d book me to have bloods I had already
Kowbie
in
Thyroid UK
1 year ago
1
...
8
9
10
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Cure Parkinson's
775 results
Thyroid UK
638 results
Pernicious Anaemia Society
294 results
View top 10 communities
Sort by
Most Relevant
Newest