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Onset/diagnosis after years
Good morning. I welcome you very warmly. This is my first post. I am not from UK, so my English is poor, sorry for any mistakes. In a nutshell: my aunt got sick in 2012. The diagnosis: Parkinson's. Treatment with levodopa had short-lived effects so doctors decided to use DBS therapy. DBS did not have
Good morning. I welcome you very warmly. This is my first post. I am not from UK, so my English is poor, sorry for any mistakes. In a nutshell: my aunt got sick in 2012. The diagnosis: Parkinson's. Treatment with levodopa had short-lived effects so doctors decided to use DBS therapy. DBS did not have
Paulaaaa
in
PSP Association
1 year ago
Shall I stop B12 now?
I am finally feeling much better than I have in a long time, so thanks everyone for your posts and advice that i have been reading for a long time now. I've started Iron (ferrous sulphate) since 11 October, prescription was for 3/4 months so i assume it takes a long time to build up? Also added a lot
I am finally feeling much better than I have in a long time, so thanks everyone for your posts and advice that i have been reading for a long time now. I've started Iron (ferrous sulphate) since 11 October, prescription was for 3/4 months so i assume it takes a long time to build up? Also added a lot
Fizzyinch
in
Thyroid UK
1 year ago
will using shampoo with biotin in it impact my blood tests?
just realised I am using a “biotin and collagen” shampoo. Used it Monday, have full thyroid blood tests due on Thursday. Will this impact results?
just realised I am using a “biotin and collagen” shampoo. Used it Monday, have full thyroid blood tests due on Thursday. Will this impact results?
Babymagic37
in
Thyroid UK
1 year ago
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Has anyone experienced benefits from coq10
According to the following article Comparing the youngest age people to the oldest, the number of striatal dopamine transporters was cut by 46%, or 6.6% per decade of life.3 The rate of loss of dopamine transporters is accelerated in Parkinson's patients, and this age-related factor may suggest why
According to the following article Comparing the youngest age people to the oldest, the number of striatal dopamine transporters was cut by 46%, or 6.6% per decade of life.3 The rate of loss of dopamine transporters is accelerated in Parkinson's patients, and this age-related factor may suggest why
Farooqji
in
Cure Parkinson's
1 year ago
Timing of meds and supplements?
I wonder if anyone is able to share their optimal timing schedule- I feel like there aren’t enough hours in the day for all the different tablets with their exclusion zones! Not to mention fitting coffee into the day! This is what I currently take:
On waking:
ferograd C iron (every other day
I wonder if anyone is able to share their optimal timing schedule- I feel like there aren’t enough hours in the day for all the different tablets with their exclusion zones! Not to mention fitting coffee into the day! This is what I currently take:
On waking:
ferograd C iron (every other day
musette
in
Thyroid UK
1 year ago
Mega high Selenium. 367ug/L (67-135). Taking 200mcg daily. Does anyone taking this dose know what their selenium levels are?
Started 200mcg selenium 1/8/22 to try to get rid of puffiness under my eyes, light sensitivity, etc. I know that even the NHS consider this safe as the NHS site says that 350mcg of selenium supplements are unlikely to cause any harm. The TED charity recommend 200mcg selenium for 6mths, dropping back
Started 200mcg selenium 1/8/22 to try to get rid of puffiness under my eyes, light sensitivity, etc. I know that even the NHS consider this safe as the NHS site says that 350mcg of selenium supplements are unlikely to cause any harm. The TED charity recommend 200mcg selenium for 6mths, dropping back
Wua13262348
in
Thyroid UK
1 year ago
DBS number of surgeries vary so much from 1 to 3. Main reason surgeons say safer less complications. Is there any proof?
my DBS surgery was completed in one hospital stay. The majority of others was 2-3 hospital stays. Is there research to support that there are less complications?
my DBS surgery was completed in one hospital stay. The majority of others was 2-3 hospital stays. Is there research to support that there are less complications?
Lbi1608
in
Cure Parkinson's
1 year ago
lupus and shingles
Hey guys, I hope you’re all keeping safe and well. Just wondering if anyone has any tips or advice on how to manage having lupus and shingles! I got diagnosed on Wednesday and it’s safe to say I’m suffering a bit. Is there anything I should be looking out for? Avoiding? Thanks in advance!
Hey guys, I hope you’re all keeping safe and well. Just wondering if anyone has any tips or advice on how to manage having lupus and shingles! I got diagnosed on Wednesday and it’s safe to say I’m suffering a bit. Is there anything I should be looking out for? Avoiding? Thanks in advance!
Krishny18
in
LUPUS UK
1 year ago
dbs and massage chairs
THis might sound trival but I cannot find a good full massage chair which is pacemaker /DBS friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone. Any suggestions for Massage chairs (Europe
THis might sound trival but I cannot find a good full massage chair which is pacemaker /DBS friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone. Any suggestions for Massage chairs (Europe
Curious_Fred
in
Cure Parkinson's
1 year ago
15-Year Subthalamic Deep Brain Stimulation outcome in a Parkinson's disease patient with Parkin gene mutation: a case report
https://pubmed.ncbi.nlm.nih.gov/37032388 Case report: In 1993, a 39-year-old male was diagnosed with PD after the onset of resting tremor. Levodopa was started, and during the following 10 years, he reported good motor symptoms control, with only mild modification of levodopa intake and pramipexole
https://pubmed.ncbi.nlm.nih.gov/37032388 Case report: In 1993, a 39-year-old male was diagnosed with PD after the onset of resting tremor. Levodopa was started, and during the following 10 years, he reported good motor symptoms control, with only mild modification of levodopa intake and pramipexole
Hidden
in
Cure Parkinson's
1 year ago
pred and tetanus shot??
I will be speaking to a doctor at an emergency clinic but never confident they are well enough informed about the way PMR patients are dosed on pred. I would so appreciate the wisdom of this community. I got a cat scratch today...my fragile skin readily disintegrate...small amount of bleeding. Is
I will be speaking to a doctor at an emergency clinic but never confident they are well enough informed about the way PMR patients are dosed on pred. I would so appreciate the wisdom of this community. I got a cat scratch today...my fragile skin readily disintegrate...small amount of bleeding. Is
agingfeminist
in
PMRGCAuk
1 year ago
Shingles vaccine
My husband has been called in for a shingles vaccination. Am i correct that he should ask for a non live vaccine as the love vaccine poses a risk to me as I am immune suppressed? I seem to remember hearing this somewhere. Still struggling to get answer fro my nurse advice line. Thanks
My husband has been called in for a shingles vaccination. Am i correct that he should ask for a non live vaccine as the love vaccine poses a risk to me as I am immune suppressed? I seem to remember hearing this somewhere. Still struggling to get answer fro my nurse advice line. Thanks
Gilliancheche
in
NRAS
1 year ago
Should I take my Thyroid meds before or after a Synacthen Test?
Hi all I have a 9am SST on Tuesday and I am wondering if I take my Thyroid meds before or after? Also, I’ve been taking all my other supplements and my B12 has biotin in it, is that okay? Thanks
Hi all I have a 9am SST on Tuesday and I am wondering if I take my Thyroid meds before or after? Also, I’ve been taking all my other supplements and my B12 has biotin in it, is that okay? Thanks
Lindsayf
in
Thyroid UK
1 year ago
Central Hypo and Hashi's with multiplying nodules. Next dose to fight for, and why. Expert Help needed!
Had my NHS thyroid ultrasound 16/11/22. Waited 14 months. Given 6 days notice, and stated must have 7 days notice if need to alter appointment, otherwise go back to the end of the waiting list! 2cm flare on thyroid on M.R.I brain scan August 2021, confirmed as U2 nodule by private thyroid ultrasound
Had my NHS thyroid ultrasound 16/11/22. Waited 14 months. Given 6 days notice, and stated must have 7 days notice if need to alter appointment, otherwise go back to the end of the waiting list! 2cm flare on thyroid on M.R.I brain scan August 2021, confirmed as U2 nodule by private thyroid ultrasound
Wua13262348
in
Thyroid UK
1 year ago
Deep Brain Stimulation
Does anyone have recent personal experience of DBS for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Does anyone have recent personal experience of DBS for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Ostap
in
Ataxia UK
1 year ago
Video- a personal story
A moving video diary of one young man’s Parkinson’s journey to DBS. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
A moving video diary of one young man’s Parkinson’s journey to DBS. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
Buckholt
in
Cure Parkinson's
1 year ago
Is this what optimal looks like?
Monitor My Health results just in. After 7 weeks on 100mcg Teva Testing prep as per protocols. No Biotin supplements for 4 days etc. Feeling much more myself - I think this is good news 🦋 TSH 1.11 mIU/L (0.27 - 4.2) 21.4% Free T4 (fT4) 18.9 pmol/L (12 - 22) 69.0% Free T3 (fT3) 4.2 pmol/L (3.1
Monitor My Health results just in. After 7 weeks on 100mcg Teva Testing prep as per protocols. No Biotin supplements for 4 days etc. Feeling much more myself - I think this is good news 🦋 TSH 1.11 mIU/L (0.27 - 4.2) 21.4% Free T4 (fT4) 18.9 pmol/L (12 - 22) 69.0% Free T3 (fT3) 4.2 pmol/L (3.1
Regenallotment
in
Thyroid UK
1 year ago
Has anyone tried Glucotrust capsules and is this product from Maximum Edge any good?
A video landed in my inbox from a company promoting this. Long story about how the presenter had discovered the ingredients / formula from a Dr Kumar, at the time living in the States, now back in India. It apparently reversed the man's diabetes. I am naturally cautious, suspicious even. But I see
A video landed in my inbox from a company promoting this. Long story about how the presenter had discovered the ingredients / formula from a Dr Kumar, at the time living in the States, now back in India. It apparently reversed the man's diabetes. I am naturally cautious, suspicious even. But I see
O2Trees
in
Diabetes India
1 year ago
long-term effects of deepbrainstimulation on brain activity
Researchers led by KBI_UHN Drs. Robert Chen and Ghazaleh Darmani shed light on the long-term effects of #deepbrainstimulation on brain activity in people with #parkinsondisease, laying the groundwork for improved therapies The team discovered that deep brain stimulation increased aperiodic beta activity
Researchers led by KBI_UHN Drs. Robert Chen and Ghazaleh Darmani shed light on the long-term effects of #deepbrainstimulation on brain activity in people with #parkinsondisease, laying the groundwork for improved therapies The team discovered that deep brain stimulation increased aperiodic beta activity
Hidden
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
1 year ago
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