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Experiences with
D-bifunctional protein (DBP) deficiency
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DBS surgery to help with “ frozen feet “
I was first diagnosed with PD in 2005, over the years my symptoms were for the most part mild and controlled with meds. However several months ago I developed “ frozen feet “ it has altered my quality of life substantially. I have switched exercise workouts to a stationary bicycle, PT therapy 3 times
I was first diagnosed with PD in 2005, over the years my symptoms were for the most part mild and controlled with meds. However several months ago I developed “ frozen feet “ it has altered my quality of life substantially. I have switched exercise workouts to a stationary bicycle, PT therapy 3 times
NewHope1961
in
Cure Parkinson's
1 year ago
Low B12 and headaches
I suffer with low iron and low b12. I had an iron infusion 10 days ago, prior that I and a persistent headache for a week. I had a b12 injection 2 days after the iron infusion. The headache went 2 days after the b12 jab, but then came back 3 days later with really bad dizziness. I’ve had another b12
I suffer with low iron and low b12. I had an iron infusion 10 days ago, prior that I and a persistent headache for a week. I had a b12 injection 2 days after the iron infusion. The headache went 2 days after the b12 jab, but then came back 3 days later with really bad dizziness. I’ve had another b12
Beee2
in
Pernicious Anaemia Society
2 years ago
how much gentle iron?
what dose should i start on… i have bought iron bisglycinate 20 mg. But have been recommended 320 mcg ferrous sulphate. So very confused at the different levels. How do these figures relate to each other? And do you have to take gentle iron on an empty stomach? The bottle says to take with food. Any
what dose should i start on… i have bought iron bisglycinate 20 mg. But have been recommended 320 mcg ferrous sulphate. So very confused at the different levels. How do these figures relate to each other? And do you have to take gentle iron on an empty stomach? The bottle says to take with food. Any
Jukebox55
in
Restless Legs Syndrome
2 years ago
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Can Adaptive Deep Brain Stimulation Cure Parkinson’s Disease?
Good essay from Benjamin Stecher: https://tmrwedition.com/2022/10/20/can-adaptive-deep-brain-stimulation-cure-parkinsons-disease/ Benjamin has PD. This is his blog: https://tmrwedition.com/my-pd-journey/
Good essay from Benjamin Stecher: https://tmrwedition.com/2022/10/20/can-adaptive-deep-brain-stimulation-cure-parkinsons-disease/ Benjamin has PD. This is his blog: https://tmrwedition.com/my-pd-journey/
Bolt_Upright
in
Cure Parkinson's
1 year ago
PA with iron deficiency
Hi all.I think I told you guys that my Iron is very low. Ferritin is 5, iron saturation is 4 and always low rbc. I finally got set up with an infusion center for iron and start next. I'll do one a week for 10 weeks. I've felt off, breathy and tired for a year or so now. Someday's, i just can't get off
Hi all.I think I told you guys that my Iron is very low. Ferritin is 5, iron saturation is 4 and always low rbc. I finally got set up with an infusion center for iron and start next. I'll do one a week for 10 weeks. I've felt off, breathy and tired for a year or so now. Someday's, i just can't get off
Wowo23
in
Pernicious Anaemia Society
2 years ago
Iron/Ferritin
Dear All,I have now had my latest blood tests back and my ferritin levels, with the help of iron tablets, has risen from 45 to 120. However, unlike others in our group, my RLS are still pretty awful. Do I have to be patient and hope the RLS now improve???? Otherwise it will be pretty depressing. Sue
Dear All,I have now had my latest blood tests back and my ferritin levels, with the help of iron tablets, has risen from 45 to 120. However, unlike others in our group, my RLS are still pretty awful. Do I have to be patient and hope the RLS now improve???? Otherwise it will be pretty depressing. Sue
Simkin
in
Restless Legs Syndrome
2 years ago
OCD and Deep Brain stimulation in New York
Hello! I am new here. Could anyone help me please? I need to find out how much is the approximate cost of the surgery called deep brain stimulation in the state of New York. I would like to opt for that surgery if I qualify as suitable. I hope it's not too expensive. Thank you very much in advance. I
Hello! I am new here. Could anyone help me please? I need to find out how much is the approximate cost of the surgery called deep brain stimulation in the state of New York. I would like to opt for that surgery if I qualify as suitable. I hope it's not too expensive. Thank you very much in advance. I
KurtNash
in
My OCD Community
1 year ago
Dad’s iron studies
Hello all My dad has just collected his latest iron studies prior to call from GP at some point today. Would you mind taking a look and interpreting please. Have tried to use the Polish calculator to work out percentages but there’s an error and I can’t use it. 23/11/22 CRP <4 (0 - 9) Ferritin
Hello all My dad has just collected his latest iron studies prior to call from GP at some point today. Would you mind taking a look and interpreting please. Have tried to use the Polish calculator to work out percentages but there’s an error and I can’t use it. 23/11/22 CRP <4 (0 - 9) Ferritin
musicaljune
in
Thyroid UK
2 years ago
A New Parkinson's Treatment - DBS Plus
A New Parkinson's Treatment - DBS Plus - Feb 11, 2020 Learn about a new treatment for Parkinson's being studied at the University of Kentucky HealthCare Brain Restoration Center. https://youtu.be/mdpCPXGtxug
A New Parkinson's Treatment - DBS Plus - Feb 11, 2020 Learn about a new treatment for Parkinson's being studied at the University of Kentucky HealthCare Brain Restoration Center. https://youtu.be/mdpCPXGtxug
Bolt_Upright
in
Cure Parkinson's
1 year ago
Vagal Nerve Stimulation (tVNS) Research Summary
Some definitions for clarity. Neuromodulation, stimulating nerves (usually with electricity) to change (hopefully improve) or control their function. Deep Brain Stimulation (DBS) is a form of neuromodulation. Neuromodulation can be invasive, requiring surgery (like DBS) or noninvasive which provides
Some definitions for clarity. Neuromodulation, stimulating nerves (usually with electricity) to change (hopefully improve) or control their function. Deep Brain Stimulation (DBS) is a form of neuromodulation. Neuromodulation can be invasive, requiring surgery (like DBS) or noninvasive which provides
House2
in
Cure Parkinson's
1 year ago
A LOW BUDGET DIY VIBROTACTILE STIMULATOR FOR EXPERIMENTAL CRS
Modern techniques of Coordinated Reset Stimulation (CRS), which is usually administered with invasive deep brain stimulation, can have a miraculous effect on those suffering from Parkinson’s disease. However, the CRS technique can also apparently be administered via so-called vibrotactile CRS (vCRS)
Modern techniques of Coordinated Reset Stimulation (CRS), which is usually administered with invasive deep brain stimulation, can have a miraculous effect on those suffering from Parkinson’s disease. However, the CRS technique can also apparently be administered via so-called vibrotactile CRS (vCRS)
Farooqji
in
Cure Parkinson's
1 year ago
Ruined Life
Hi I hope you are all fine I'm sorry my English is not good but I will tryI was diagnosed with OCD 6 years ago since then my life has been completely changed my family made it worse when they had tried to help me and it ended up leaving the house and my mother was my only friend now she is the most person
Hi I hope you are all fine I'm sorry my English is not good but I will tryI was diagnosed with OCD 6 years ago since then my life has been completely changed my family made it worse when they had tried to help me and it ended up leaving the house and my mother was my only friend now she is the most person
Hidden
in
My OCD Community
1 year ago
how to get IV iron infusion
i have had RLS for 30 years. Been on dopamine for 6 years. Shocked to read about how iron can help. Has anyone been able to get IV iron infusion? Who from? How best to go about it?? thanks!!!
i have had RLS for 30 years. Been on dopamine for 6 years. Shocked to read about how iron can help. Has anyone been able to get IV iron infusion? Who from? How best to go about it?? thanks!!!
Jukebox55
in
Restless Legs Syndrome
2 years ago
chatGPT's opinion on PD - Simple and wise
Unfortunately, there is no cure for Parkinson's disease, but there are several treatments available that can help manage the symptoms and improve quality of life. Here are some of the most common approaches to treating Parkinson's disease: Medications: There are several types of medications that
Unfortunately, there is no cure for Parkinson's disease, but there are several treatments available that can help manage the symptoms and improve quality of life. Here are some of the most common approaches to treating Parkinson's disease: Medications: There are several types of medications that
Xenos
in
Cure Parkinson's
1 year ago
IMPORTANT: Nicotinamide riboside (or NAD+ or Tru Niagen) may be involved in neoplastic and metastatic processes
Some of us were taking nicotinamide riboside for RLS. A few days ago a paper was published with data suggesting it could be involved neoplastic and metastatic processes. Hence, please take this in consideration if you were taking nicotinamide riboside. Here is the reference: A bioluminescent-based
Some of us were taking nicotinamide riboside for RLS. A few days ago a paper was published with data suggesting it could be involved neoplastic and metastatic processes. Hence, please take this in consideration if you were taking nicotinamide riboside. Here is the reference: A bioluminescent-based
enjoy2013
in
Restless Legs Syndrome
2 years ago
IFAB testing guidelines per Mayo clinic laboratory website
I found this IFAB test guideline. I found a few things pretty interesting. This particular lab which is the lab that did my IFAB test says that you should be fasting for 8 hours before you take this test and you should not have had any B12 injections within 2 weeks prior to the test. Another interesting
I found this IFAB test guideline. I found a few things pretty interesting. This particular lab which is the lab that did my IFAB test says that you should be fasting for 8 hours before you take this test and you should not have had any B12 injections within 2 weeks prior to the test. Another interesting
EllaNore
in
Pernicious Anaemia Society
2 years ago
Seemingly a sudden drop in ferritin but is it really?
15/08/22 Ferritin 236ug/L (13 - 150) Quite a bit over range, so I’m puzzled that a mere 12 weeks later - 16/11/22 - according to the new reference range it has suffered a significant drop to 39% through Yes, I immediately stopped iron supplementation but I continued with acerola to aid with food
15/08/22 Ferritin 236ug/L (13 - 150) Quite a bit over range, so I’m puzzled that a mere 12 weeks later - 16/11/22 - according to the new reference range it has suffered a significant drop to 39% through Yes, I immediately stopped iron supplementation but I continued with acerola to aid with food
Noelnoel
in
Thyroid UK
2 years ago
Iron Infusions
An interesting article on iron infusions and when they should be considered for the general population.It mentions that inflammation can stop iron absorption. It also confirms that newer iv iron formulations are much safer with very low risk of adverse side effects. Most GPs will say iron infusions are
An interesting article on iron infusions and when they should be considered for the general population.It mentions that inflammation can stop iron absorption. It also confirms that newer iv iron formulations are much safer with very low risk of adverse side effects. Most GPs will say iron infusions are
Joolsg
in
Restless Legs Syndrome
2 years ago
results
follow on from my post yesterday finally have full test results. There also full blood count results but I guess they’re not relevant Test results 9 nov 22 Thyroid ft4 13.1 (12-22) TSH 2.49 (0.27-4.20) Ferritin 9.1 (13-150) Transferrin 3.49 (2.0-3.6) Iron 12.6 (10-30) Saturation % 14.4 (<55)
follow on from my post yesterday finally have full test results. There also full blood count results but I guess they’re not relevant Test results 9 nov 22 Thyroid ft4 13.1 (12-22) TSH 2.49 (0.27-4.20) Ferritin 9.1 (13-150) Transferrin 3.49 (2.0-3.6) Iron 12.6 (10-30) Saturation % 14.4 (<55)
jeffbird
in
Thyroid UK
2 years ago
Blood Test Results - Unusual Symptoms
Hi there I'm a 56 year old woman and have been treated for an under active thyroid for a decade or so. Currently taking 150 mcg Levothyroxine sodium per day. Around 8 weeks ago I started to experience some unusual symptoms; intense anxiety, fatigue, calf muscle twitches (and random twitching elsewhere
Hi there I'm a 56 year old woman and have been treated for an under active thyroid for a decade or so. Currently taking 150 mcg Levothyroxine sodium per day. Around 8 weeks ago I started to experience some unusual symptoms; intense anxiety, fatigue, calf muscle twitches (and random twitching elsewhere
DonEstello
in
Thyroid UK
2 years ago
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