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Experiences with
D-bifunctional protein (DBP) deficiency
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Scottish girl is world's youngest deep brain stimulation patient
Scottish girl is world's youngest deep brain stimulation patient https://www.theguardian.com/science/2019/jul/10/scottish-girl-worlds-youngest-person-to-be-treated-with-deep-brain-stimulation? I've posted about this kind of thing before. Although, deep brain stimulation is a bit extreme for the sorts
Scottish girl is world's youngest deep brain stimulation patient https://www.theguardian.com/science/2019/jul/10/scottish-girl-worlds-youngest-person-to-be-treated-with-deep-brain-stimulation? I've posted about this kind of thing before. Although, deep brain stimulation is a bit extreme for the sorts
monkeybus
in
AMN EASIER
5 years ago
DBS Patient: 2 years old!
https://amp.theguardian.com/science/2019/jul/10/scottish-girl-worlds-youngest-person-to-be-treated-with-deep-brain-stimulation
https://amp.theguardian.com/science/2019/jul/10/scottish-girl-worlds-youngest-person-to-be-treated-with-deep-brain-stimulation
Hidden
in
Cure Parkinson's
5 years ago
iron defiency anemia
I have iron defiency anemia and last yr aug 2018 i had a ferritin transfusion. a yr later now june 2019 i have it again but i cant get a transfusion cause my ferritin is to high (700) it use to be around 230 before i got the transfusion. then went up to over 1000. it started comming down and went
I have iron defiency anemia and last yr aug 2018 i had a ferritin transfusion. a yr later now june 2019 i have it again but i cant get a transfusion cause my ferritin is to high (700) it use to be around 230 before i got the transfusion. then went up to over 1000. it started comming down and went
joe123456
in
Pernicious Anaemia Society
5 years ago
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Anyone taking Apokyn?
I was diagnosed over 19 years ago. I have been on Stalevo for years. Just went from 6x to 7x a day. I have had DBS Surgery. I have done remarkably well. but I have fought the fight with everything I have in me. I exercise (Rock Steady Boxing). I am 70 yrs old and have Pretty incredible biceps
I was diagnosed over 19 years ago. I have been on Stalevo for years. Just went from 6x to 7x a day. I have had DBS Surgery. I have done remarkably well. but I have fought the fight with everything I have in me. I exercise (Rock Steady Boxing). I am 70 yrs old and have Pretty incredible biceps
tnleighla
in
Cure Parkinson's
5 years ago
DBS Story
I had my DBS on March 20 2019.at one ofthe famous hospital in India. Still tuning going on. I have stiff neck. Taking 75 percent medicine. Surgeon claims your STN was too much narrow and thin. So it will take some time. God only knows when I will recover. Awaiting with lot of problems.Intial 2 months
I had my DBS on March 20 2019.at one ofthe famous hospital in India. Still tuning going on. I have stiff neck. Taking 75 percent medicine. Surgeon claims your STN was too much narrow and thin. So it will take some time. God only knows when I will recover. Awaiting with lot of problems.Intial 2 months
muragod
in
Cure Parkinson's
5 years ago
Advice Please
Hi all. I've been having significant hypo symptoms for about a week now. Had blood tests done 2 weeks ago and showed this: Serum Ferritin (15-250) 29/05/19- 28ug/L 17/11/17- 42.6 ug/L 8/11/18- 36 ug/L FT3 (3.5-6.5) 29/05/2019- 2.7pmol/L 22/02/2019- 4.2pmol/L 7/01/2019- 3.9 pmol/L FT4 (10-
Hi all. I've been having significant hypo symptoms for about a week now. Had blood tests done 2 weeks ago and showed this: Serum Ferritin (15-250) 29/05/19- 28ug/L 17/11/17- 42.6 ug/L 8/11/18- 36 ug/L FT3 (3.5-6.5) 29/05/2019- 2.7pmol/L 22/02/2019- 4.2pmol/L 7/01/2019- 3.9 pmol/L FT4 (10-
SAUK
in
Thyroid UK
5 years ago
Low Iron - Are my symptoms normal?
From the end of November last year, until the first week of January this year I was experiencing a weird feeling of dizziness, and generally feeling ‘out of it’. I went to my doctor, and they diagnosed an inner ear infection as they weren’t 100% sure, which required no treatment. My symptoms disappeared
From the end of November last year, until the first week of January this year I was experiencing a weird feeling of dizziness, and generally feeling ‘out of it’. I went to my doctor, and they diagnosed an inner ear infection as they weren’t 100% sure, which required no treatment. My symptoms disappeared
Hidden
in
Thyroid UK
5 years ago
DBS has changed my life
Yes Dbs has reduced medication by 75%. It has made my Dyskenisia disappear. With setting changes have not visited the doctor even after 15 months after surgery.
Yes Dbs has reduced medication by 75%. It has made my Dyskenisia disappear. With setting changes have not visited the doctor even after 15 months after surgery.
hermie
in
Cure Parkinson's
5 years ago
Further adjustment required
Hi all This is a link to my vlog about speech problems associated with deep brain stimulation surgery. https://youtu.be/N3SJwYgvVPs Cheers, Ian
Hi all This is a link to my vlog about speech problems associated with deep brain stimulation surgery. https://youtu.be/N3SJwYgvVPs Cheers, Ian
Ianfrizell
in
Cure Parkinson's
5 years ago
Help. Explosive episodes of anger. Is this dementia?
Help needed. My mom just started throwing fits about a week ago. It’s been consistent every day. She flips a switch all of a sudden and starts screaming and crying. She has moments of hallucinations and doesn’t recognize me. She is having arthritis pain in her shoulder and she will scream and yell for
Help needed. My mom just started throwing fits about a week ago. It’s been consistent every day. She flips a switch all of a sudden and starts screaming and crying. She has moments of hallucinations and doesn’t recognize me. She is having arthritis pain in her shoulder and she will scream and yell for
Leylaleyla
in
Cure Parkinson's
5 years ago
Gastroenterologist low b12 positive antiparietal antibody screen
Hi, am asking for some advice, last year ended up ventilated on ITU with sepsis. My Hb had dropped to 6.1 and was transfused I was given one of injection of b12 evening though I am out of reference range on b12 vit d iron folate. My hb is 9.3 and has not climbed since last August. They are talking about
Hi, am asking for some advice, last year ended up ventilated on ITU with sepsis. My Hb had dropped to 6.1 and was transfused I was given one of injection of b12 evening though I am out of reference range on b12 vit d iron folate. My hb is 9.3 and has not climbed since last August. They are talking about
Ferrett1
in
Pernicious Anaemia Society
5 years ago
B12 deficient?
Hello - I've been here before asking for advice and hopefully someone can help. I'm 44 (as of last week) and have Hashimotos disease. I'm currently on 50mcg Levothyroxine and have been on this starter dose since January. My GP won't increase it despite my showing symptoms of being undermedicated. I
Hello - I've been here before asking for advice and hopefully someone can help. I'm 44 (as of last week) and have Hashimotos disease. I'm currently on 50mcg Levothyroxine and have been on this starter dose since January. My GP won't increase it despite my showing symptoms of being undermedicated. I
Hidden
in
Pernicious Anaemia Society
5 years ago
Grey Area hypothyroidism / Anemia not on levothyroxine at present by choice as my husbands on them and had problems ,
Hi everyone I was told after 4 blood tests I was in a very grey area ! Apparently I tested positive for antibodies . Also I have had a diagnosis for anemia , which wasn't a suprise as I suffered since 12 years old on and off when I was 18 I was pregnant with pernicious anemia and rushed in for a blood
Hi everyone I was told after 4 blood tests I was in a very grey area ! Apparently I tested positive for antibodies . Also I have had a diagnosis for anemia , which wasn't a suprise as I suffered since 12 years old on and off when I was 18 I was pregnant with pernicious anemia and rushed in for a blood
Greyarea73
in
Thyroid UK
5 years ago
Answering Questions about Deep Brain Stimulation
https://www.michaeljfox.org/form/dbs-pdf-form?id=2&os_cid=tw-a1b1R0000086fBT
https://www.michaeljfox.org/form/dbs-pdf-form?id=2&os_cid=tw-a1b1R0000086fBT
Farooqji
in
Cure Parkinson's
5 years ago
Invasive and non‐invasive brain stimulation in Parkinson's disease: Clinical effects and future perspectives
Deep brain stimulation (DBS) can improve motor symptoms in moderate to advanced PD. However, the optimal stimulation paradigm for non‐motor symptoms, freezing of gait and the optimal timing of DBS are still under investigations. The findings of pathological oscillations and abnormal frequency to amplitude
Deep brain stimulation (DBS) can improve motor symptoms in moderate to advanced PD. However, the optimal stimulation paradigm for non‐motor symptoms, freezing of gait and the optimal timing of DBS are still under investigations. The findings of pathological oscillations and abnormal frequency to amplitude
Farooqji
in
Cure Parkinson's
5 years ago
Should I increase thyroxine before period due?
Hi, Quick question for our lady members. My periods aren’t particularly heavy but over the last few months they’ve knocked me for 6. I’m exhausted, weak and barely functioning. Feel fine for the other 3 weeks. I have a stressful job with long hours and struggle to get enough sleep as I’m up at 5.30am
Hi, Quick question for our lady members. My periods aren’t particularly heavy but over the last few months they’ve knocked me for 6. I’m exhausted, weak and barely functioning. Feel fine for the other 3 weeks. I have a stressful job with long hours and struggle to get enough sleep as I’m up at 5.30am
Newmummy82
in
Thyroid UK
5 years ago
About DBS
Does anyone undergone for DBS, 1. After DBS also should take medicine 2. Any side effects 3. How long it will take to recover post surgery 4. What is the IPG machine using, which machine is good
Does anyone undergone for DBS, 1. After DBS also should take medicine 2. Any side effects 3. How long it will take to recover post surgery 4. What is the IPG machine using, which machine is good
Vishwa228
in
Cure Parkinson's
5 years ago
Is this due to low iron??
Fasting blood test, 9am Taking 50mcg levo, 20mcg t3 Have been cleared of pituitary issue through mri. Vitamins optimal except iron—— Serum 13.1 (7-26) Transferrin 2.68 (2-3.2) Ferritin 45 (5-204) Sat 20% (20-60) Does Janie bowthropes article on pooling and iron reflect what might be happening to me??
Fasting blood test, 9am Taking 50mcg levo, 20mcg t3 Have been cleared of pituitary issue through mri. Vitamins optimal except iron—— Serum 13.1 (7-26) Transferrin 2.68 (2-3.2) Ferritin 45 (5-204) Sat 20% (20-60) Does Janie bowthropes article on pooling and iron reflect what might be happening to me??
Dee8686
in
Thyroid UK
5 years ago
DBS for essential tremors?
I'm new to this site and am considering DBS. Has anyone had DBS (deep brain surgery) for essential tremors of hands, head (cervical dystonia) and voice? What result? My neurologists say it will help with my shaky head. I know DBS helps shaky hands, it's my shaky head that is annoying!
I'm new to this site and am considering DBS. Has anyone had DBS (deep brain surgery) for essential tremors of hands, head (cervical dystonia) and voice? What result? My neurologists say it will help with my shaky head. I know DBS helps shaky hands, it's my shaky head that is annoying!
piano_gal
in
National Tremor Foundation
5 years ago
Losing hope
Dx 2003 aged 46. until about 6 months ago i refused to be beaten. Now I am utterly beaten. For years I’ve taken madopar every 90 mins . I have always had sudden swings between off and on but was able to make them bearable – with the odd blip - with extra madopar. I worked out years ago that protein interferes
Dx 2003 aged 46. until about 6 months ago i refused to be beaten. Now I am utterly beaten. For years I’ve taken madopar every 90 mins . I have always had sudden swings between off and on but was able to make them bearable – with the odd blip - with extra madopar. I worked out years ago that protein interferes
pen1
in
Cure Parkinson's
5 years ago
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