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Experiences with
D-bifunctional protein (DBP) deficiency
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Blood results
Hi, i have now received my blood results and would like some advice please Sue/Jools. Transferrin Saturation 44% Serum Iron 25umol/l (normal 14-29) Serum Transferrin 2.28g/l Serum Ferritin 50 I hopefully have an appointment today
Hi, i have now received my blood results and would like some advice please Sue/Jools. Transferrin Saturation 44% Serum Iron 25umol/l (normal 14-29) Serum Transferrin 2.28g/l Serum Ferritin 50 I hopefully have an appointment today
Dires
in
Restless Legs Syndrome
1 year ago
Foslevodopa-Foscarbidopa (Vyalev)
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
bcjlynne
in
Cure Parkinson's
10 months ago
DBS switch on news.
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
jeeves19
in
Cure Parkinson's
10 months ago
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new results after iron transfusion-help pls
Hi I’ve had an iron transfusion and retested. My ferritin has gone from rock bottom to beautiful. I’d like help with the rest of the results. I’m taking levo AM 150mcg. The usual protocols were followed for testing. I no longer take T3. Thank you
Hi I’ve had an iron transfusion and retested. My ferritin has gone from rock bottom to beautiful. I’d like help with the rest of the results. I’m taking levo AM 150mcg. The usual protocols were followed for testing. I no longer take T3. Thank you
Emuflea
in
Thyroid UK
1 year ago
Help with iron bloods
Hi, SeasideSusiehumanbean I was wondering if you can kindly help me with my latest iron results. I am on 100 mcg levo. ferritin blood - 23.5 Haemoglobin- 147 White cell count - 5.6 Platelets - 4.70 Haematrocit - 0.425 MCV - 90.4 MCH - 31.3 MCHC - 346 RDW - 11.2 Lymphocytes 2.5 Neutrophils
Hi, SeasideSusiehumanbean I was wondering if you can kindly help me with my latest iron results. I am on 100 mcg levo. ferritin blood - 23.5 Haemoglobin- 147 White cell count - 5.6 Platelets - 4.70 Haematrocit - 0.425 MCV - 90.4 MCH - 31.3 MCHC - 346 RDW - 11.2 Lymphocytes 2.5 Neutrophils
Denny39
in
Thyroid UK
1 year ago
"BREAKTHROUGH" device approved by FDA for PD
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
PDWarrior1900
in
Cure Parkinson's
10 months ago
Iron Deficiency Help!
Hi. Back in January I was diagnosed with iron deficiency anaemia and was put on supplements for 3 months, and then to have a follow up blood test a month after finishing the supplements. My ferritin has come up from 5 to 47 (range 30-148) and I was just wondering what sort of response anyone else who
Hi. Back in January I was diagnosed with iron deficiency anaemia and was put on supplements for 3 months, and then to have a follow up blood test a month after finishing the supplements. My ferritin has come up from 5 to 47 (range 30-148) and I was just wondering what sort of response anyone else who
Hidden
in
Thyroid UK
1 year ago
When will we reconcile with the fact that there is no cure now? Possibly never?
This is a vent. Sorry for this, but I am frustrated with the disease and the daily stress of living with it. People don't understand what we're going through and have limited patience with our strange condition. Family and friends who observe us at close quarters start to form their own opinions about
This is a vent. Sorry for this, but I am frustrated with the disease and the daily stress of living with it. People don't understand what we're going through and have limited patience with our strange condition. Family and friends who observe us at close quarters start to form their own opinions about
pdpatient
in
Cure Parkinson's
10 months ago
DBS and balance
My left side is amore severe than right hence the voltage is higher and more contact points . My body tends to tilt to the right’ and I tend to fall backward on the right, My neurologist tried to reduce the frequency, it helps with the balance but not so good at reducing stiffness. Any insight?
My left side is amore severe than right hence the voltage is higher and more contact points . My body tends to tilt to the right’ and I tend to fall backward on the right, My neurologist tried to reduce the frequency, it helps with the balance but not so good at reducing stiffness. Any insight?
limcheeese22
in
Cure Parkinson's
10 months ago
Too much C\L worsens symptoms?
Dx 6 years ago DBS 3 years ago . lately take extra dose for some occasions, my body becomes more tense, stiffer and slower no dskynesia though then I take another dose to address it ,sometimes work sometimes don’t, it confuses me, Does anyone have experience to share?
Dx 6 years ago DBS 3 years ago . lately take extra dose for some occasions, my body becomes more tense, stiffer and slower no dskynesia though then I take another dose to address it ,sometimes work sometimes don’t, it confuses me, Does anyone have experience to share?
limcheeese22
in
Cure Parkinson's
10 months ago
17 hour flight
I have been invited to a wedding in Louisiana later this year. My RLS is still problematic but manageable at home with Buprenorphine and Pregabalin and walking around / standing up. I am doubtful about the 17 hours flights. I can't ever remember going that long without several attacks of RLS. I've
I have been invited to a wedding in Louisiana later this year. My RLS is still problematic but manageable at home with Buprenorphine and Pregabalin and walking around / standing up. I am doubtful about the 17 hours flights. I can't ever remember going that long without several attacks of RLS. I've
Biscuitface
in
Restless Legs Syndrome
1 year ago
Heart pacemaker and DBS
Are there individuals or patients who have had heart pacemakers and DBS? Any thoughts, suggestions or comments. and are making use of them?
Are there individuals or patients who have had heart pacemakers and DBS? Any thoughts, suggestions or comments. and are making use of them?
surdug1
in
British Heart Foundation
10 months ago
On iron supplements but my ferritin did not increase
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
WhyAmISoTired
in
Thyroid UK
1 year ago
DBS scars after one week
Hi everyone. Here’s how it looks after a week. I look a bit startled in this don’t I ? Probably astonished that the sun is shining in the U.K.
Hi everyone. Here’s how it looks after a week. I look a bit startled in this don’t I ? Probably astonished that the sun is shining in the U.K.
jeeves19
in
Cure Parkinson's
11 months ago
Heart pacemaker and DBS
Are there individuals or patients who have had heart pacemakers and DBS? Any thoughts, suggestions or comments.
Are there individuals or patients who have had heart pacemakers and DBS? Any thoughts, suggestions or comments.
surdug1
in
Cure Parkinson's
11 months ago
Results please
Im taking teva levothyroxine 75mcg and t3, 5mcg at morning with levo then 10mcg afternoon.My symptoms have greatly improved with the addition of t3, but having increasing problems with low stomach acid. Any advice will be most welcome 🌸🌸🌸🌸🌸🌸🌸🌸🌸🌸
Im taking teva levothyroxine 75mcg and t3, 5mcg at morning with levo then 10mcg afternoon.My symptoms have greatly improved with the addition of t3, but having increasing problems with low stomach acid. Any advice will be most welcome 🌸🌸🌸🌸🌸🌸🌸🌸🌸🌸
Geegee777
in
Thyroid UK
1 year ago
Iron tablets and T3 timing?
I'm trying to raise my low ferritin (33 at last test) and am taking ferrous sulphate twice a day (will be testing my levels again soon).I was previously taking my T3 meds once a day but am having a bit of trouble tolerating a recent 5mcg increase (was taking 10, now 15mcg) so I'd like to try splitting
I'm trying to raise my low ferritin (33 at last test) and am taking ferrous sulphate twice a day (will be testing my levels again soon).I was previously taking my T3 meds once a day but am having a bit of trouble tolerating a recent 5mcg increase (was taking 10, now 15mcg) so I'd like to try splitting
Smorzando
in
Thyroid UK
1 year ago
About me
In the late spring of 2015, I found myself depressed. I sought out a psychologist. I quite liked him, but treatment had no positive effects. I was experiencing strange physical effects at the same time… Things like walking became difficult, my body was stiff, and my sense of smell and taste had diminished
In the late spring of 2015, I found myself depressed. I sought out a psychologist. I quite liked him, but treatment had no positive effects. I was experiencing strange physical effects at the same time… Things like walking became difficult, my body was stiff, and my sense of smell and taste had diminished
Megafone
in
Cure Parkinson's
11 months ago
DBS in restless legs syndrome: a new therapeutic approach
has anyone any information on Deep Brain Stimulation (DBS) and RLS? This is the title of a short case study in Sleep Medicine 2020 by Casoni et al Might it help some of us ?
has anyone any information on Deep Brain Stimulation (DBS) and RLS? This is the title of a short case study in Sleep Medicine 2020 by Casoni et al Might it help some of us ?
thorp
in
Restless Legs Syndrome
11 months ago
I vont to be alone…………
8 years in, DBS on Wednesday. You know you’re sick when you’re actually looking forward to brain 🧠 surgery eh? 😂. I was thinking last night how much I rely on my wife these days. Such a fine woman 👩: cooks food, washes the clothes, takes our pooch for a walk, hold down a teaching job, taxis me about
8 years in, DBS on Wednesday. You know you’re sick when you’re actually looking forward to brain 🧠 surgery eh? 😂. I was thinking last night how much I rely on my wife these days. Such a fine woman 👩: cooks food, washes the clothes, takes our pooch for a walk, hold down a teaching job, taxis me about
jeeves19
in
Cure Parkinson's
11 months ago
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