Search
Search
About
Log in
Join
Experiences with
D-bifunctional protein (DBP) deficiency
Posts
Communities
2,076 public posts
Filter results
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
4 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
4 months ago
Advice on Medichecks and GP iron results please
On 21st June I had some tests done by GP early morning and fasting. Results were: IRON = 13 umol/l (6-35) SERUM TRANSFERRIN =2.52g/l (2-3.6) TRANSFERRIN SATURATION= 21% No range given FERRITIN = 69ug/l (13-150 or 13-300 if post meno) I am past meno
On 21st June I had some tests done by GP early morning and fasting. Results were: IRON = 13 umol/l (6-35) SERUM TRANSFERRIN =2.52g/l (2-3.6) TRANSFERRIN SATURATION= 21% No range given FERRITIN = 69ug/l (13-150 or 13-300 if post meno) I am past meno
Eton
in
Thyroid UK
11 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
4 months ago
Iron Infusions for RLS
Another research paper showing iron infusions of Ferric Carboxymaltose improves RLS. We now have the uphill battle of convincing our GPs and neurologists. If you are trying to persuade your medical team to follow the Mayo Clinic Algorithm and increase serum ferritin as first line treatment for RLS,
Another research paper showing iron infusions of Ferric Carboxymaltose improves RLS. We now have the uphill battle of convincing our GPs and neurologists. If you are trying to persuade your medical team to follow the Mayo Clinic Algorithm and increase serum ferritin as first line treatment for RLS,
Joolsg
in
Restless Legs Syndrome
11 months 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
4 months 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
4 months ago
Next NoSilverBullet webinar on 12th of February: Dr Raul Martinez on “The role of Focused Ultrasound in the management of Parkinson's”
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
Michel0220
in
Cure Parkinson's
4 months ago
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
nednedned
in
Cure Parkinson's
5 months ago
Your thyroid and iron deficiency stories, please
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
HowNowWhatNow
in
Thyroid UK
11 months ago
AAV-GAD Gene Therapy
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
JohnP65
in
Cure Parkinson's
5 months ago
Understanding listening time at certain Db?
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Fulltimemuso
in
Tinnitus UK
5 months ago
serum iron
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
Elsie77
in
Restless Legs Syndrome
11 months ago
Clarification of blood results
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hollybushroad
in
Thyroid UK
1 year ago
Has anyone tried “compassionate use” or “right to try” laws?
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
LeharLover62
in
Cure Parkinson's
6 months ago
Treatment for severe OCD
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
languageteacher
in
My OCD Community
6 months ago
Iron low
Hello, I just got back my blood work test and the iron read a little low, so I was wondering if anyone else here on the panel with pernicious anemia has had low iron. My iron binding is within range. Iron level is in range but iron percent transferring saturation is reading slightly low
Hello, I just got back my blood work test and the iron read a little low, so I was wondering if anyone else here on the panel with pernicious anemia has had low iron. My iron binding is within range. Iron level is in range but iron percent transferring saturation is reading slightly low
25092
in
Pernicious Anaemia Society
1 year ago
blood test back - any thoughts?
So now I am off all my meds, and started taking 200mg iron a night a month ago, my ferritin level just came back as 80, which I was quite surprised. The last one in 2020 was over 120. Should I double the dose and split it through the day or take 2 tabs before bed? Also my white blood count came back
So now I am off all my meds, and started taking 200mg iron a night a month ago, my ferritin level just came back as 80, which I was quite surprised. The last one in 2020 was over 120. Should I double the dose and split it through the day or take 2 tabs before bed? Also my white blood count came back
Phantom38
in
Restless Legs Syndrome
1 year ago
Iron Deficiency Without Anemia (IDWA)
In my "I'm Alive!" post yesterday I discussed my crashing with effectively no iron in my system with a condition called Iron Deficiency Without Anemia (IDWA). As promised here is a more detail discussion of that condition that anyone with autoimmune PA/AIG should keep their eye on. Knowing that iron
In my "I'm Alive!" post yesterday I discussed my crashing with effectively no iron in my system with a condition called Iron Deficiency Without Anemia (IDWA). As promised here is a more detail discussion of that condition that anyone with autoimmune PA/AIG should keep their eye on. Knowing that iron
Rexz
in
Pernicious Anaemia Society
1 year ago
DBS stopped working
I’m looking to see if anyone has experienced similar DBS results, I had my DBS(GPI) surgery on 7/31 and immediately had positive results before the switch on. It felt like I was cured but I knew that this was the honeymoon phase. After a week or so my symptoms returned until I had my first programming
I’m looking to see if anyone has experienced similar DBS results, I had my DBS(GPI) surgery on 7/31 and immediately had positive results before the switch on. It felt like I was cured but I knew that this was the honeymoon phase. After a week or so my symptoms returned until I had my first programming
robclem
in
Cure Parkinson's
6 months 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
770 results
Thyroid UK
630 results
Pernicious Anaemia Society
292 results
View top 10 communities
Sort by
Most Relevant
Newest