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Shingles after GCA
I was dx with GCA in March/19, tapered off pred in Dec/20. July21 dx with vitiligo, yer another autoimmune. Dec/22 dx with shingles, which affected my left eye. Now I am pretty much over the shingles, but having terrible headaches esp overnight. Blood pressure which has always been low (100/60
I was dx with GCA in March/19, tapered off pred in Dec/20. July21 dx with vitiligo, yer another autoimmune. Dec/22 dx with shingles, which affected my left eye. Now I am pretty much over the shingles, but having terrible headaches esp overnight. Blood pressure which has always been low (100/60
pugrescue
in
PMRGCAuk
1 year ago
Off meds because of Shingles, but maybe answers to other concerns…..
So about 18 months ago I started feeling nauseous occasionally. Moved taking my mtx tablets to the evening, and upped folic acid from 1 a week to 3, then 5. Not making much difference so moved to mtx injections. Still feeling nauseous but RA team reluctant to pin on Mtx as nauseous is generally after
So about 18 months ago I started feeling nauseous occasionally. Moved taking my mtx tablets to the evening, and upped folic acid from 1 a week to 3, then 5. Not making much difference so moved to mtx injections. Still feeling nauseous but RA team reluctant to pin on Mtx as nauseous is generally after
Hollyhock123
in
NRAS
1 year ago
Health update
Hello everyone, not sure if this helps... I went through genetic testing and they found my KMT2B gene activated. This is odd due to my age and how aggresive it is. My Dr has never seen this happen before. In actuality, there is nothing in written human history (as far as I know) that shows late stage
Hello everyone, not sure if this helps... I went through genetic testing and they found my KMT2B gene activated. This is odd due to my age and how aggresive it is. My Dr has never seen this happen before. In actuality, there is nothing in written human history (as far as I know) that shows late stage
Hidden
in
Functional Neurological Disorder - FND Hope
1 year ago
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PREPARING FOR DBS SURGERY. VERY WORRIED ABOUT THE INEVITABLE SIDE EFFECTS.
Hi every Parkies on this forum. If you are a PIGD non tremor dominant, young onset PD person, and have done Deep brain stimulation, please respond to my questions, How was your experience with the Neuropsychologist? What was the computer test like? Please share the negatives, if any post surgery.
Hi every Parkies on this forum. If you are a PIGD non tremor dominant, young onset PD person, and have done Deep brain stimulation, please respond to my questions, How was your experience with the Neuropsychologist? What was the computer test like? Please share the negatives, if any post surgery.
OREOLU
in
Cure Parkinson's
1 year ago
I despise to the stigma of mental illness
I have been doing a lot of promotion lately to help pulverize the stigma of mental illness. I strongly believe the stigma plays a very direct and prominent role in people dying. Specifcally for MDD, as that is my main diagnosis. I have uncovered a lot of insights about the stigma along my journey.
I have been doing a lot of promotion lately to help pulverize the stigma of mental illness. I strongly believe the stigma plays a very direct and prominent role in people dying. Specifcally for MDD, as that is my main diagnosis. I have uncovered a lot of insights about the stigma along my journey.
jnelson66
in
Major Depressive Disorder (MDD) Support
1 year ago
Shingles vaccine
Shingles vaccination. I’ve been offered this vaccination but as this is a live vaccine, is it a wise move ?
Shingles vaccination. I’ve been offered this vaccination but as this is a live vaccine, is it a wise move ?
61Annie
in
LUPUS UK
1 year ago
Treatment Resistant Major Depressive Disorder: I am proof that there is hope.
I have been horrifically plagued by MDD for over a decade. In my journey I have tried literally every therapy and intervention possible including multiple medications, every psychotherapy possible, residential treatment programs, partial hospitalization plans, intensive outreach programs, TMS, ECT, ketamine
I have been horrifically plagued by MDD for over a decade. In my journey I have tried literally every therapy and intervention possible including multiple medications, every psychotherapy possible, residential treatment programs, partial hospitalization plans, intensive outreach programs, TMS, ECT, ketamine
jnelson66
in
Major Depressive Disorder (MDD) Support
1 year ago
blood sugar levels
I read that levodopa carbadopa increases your blood level of glucose does anyone take any non-dopamine therapy that works when I take levadopa I can’t stand up. And all of my te tendons, get weak and burn. I also have Lyme disease I’ll read that to her and dopamine enhance Lyme disease.
I read that levodopa carbadopa increases your blood level of glucose does anyone take any non-dopamine therapy that works when I take levadopa I can’t stand up. And all of my te tendons, get weak and burn. I also have Lyme disease I’ll read that to her and dopamine enhance Lyme disease.
Marcia123
in
Cure Parkinson's
1 year ago
Information Packs
Our Information Pack is full of useful knowledge, from practical advice, to tips on where to find the best support. It includes information about tumour types and treatments, what to ask your medical team and important things to consider. While packs may be particularly useful for those who have recently
Our Information Pack is full of useful knowledge, from practical advice, to tips on where to find the best support. It includes information about tumour types and treatments, what to ask your medical team and important things to consider. While packs may be particularly useful for those who have recently
Zhaleh_TBTC
Administrator
in
Acoustic Neuroma Support
1 year ago
PLEASE REPLY IF YOU ARE A NON TREMOR DOMINANT PARKISON'S PATIENT WHO HAD DEEP BRAIN STIMULATION DONE.
MY QUESTIONS ARE : DID YOU HAVE BALANCE AND GAIT PROBLEMS BEFORE HAVING DBS SURGERY? iF YES,DID DBS HELP WITH IMPROVING YOUR GAIIT AND BALANCE? 2)WHAT ARE THE BENEFITS THAT YOU GAIN FROM DBS? 3) WHEN WAS YOU DBS DONE? 4) WILL YOU DO IT AGAI N?
MY QUESTIONS ARE : DID YOU HAVE BALANCE AND GAIT PROBLEMS BEFORE HAVING DBS SURGERY? iF YES,DID DBS HELP WITH IMPROVING YOUR GAIIT AND BALANCE? 2)WHAT ARE THE BENEFITS THAT YOU GAIN FROM DBS? 3) WHEN WAS YOU DBS DONE? 4) WILL YOU DO IT AGAI N?
OREOLU
in
Cure Parkinson's
1 year ago
Pre-Obstructive Hydrocephalus
My neurosurgeon has diagnosed me with 'pre hydrocephalus'. It's on its way. Saw the annual MRI scan and the 1.9 cm pineal cyst from 2018 has grown, beginning to block and ventricles have begun to swell bigger. I already suffer chronic and hemiplegic migraines and the symptoms from those mix with the
My neurosurgeon has diagnosed me with 'pre hydrocephalus'. It's on its way. Saw the annual MRI scan and the 1.9 cm pineal cyst from 2018 has grown, beginning to block and ventricles have begun to swell bigger. I already suffer chronic and hemiplegic migraines and the symptoms from those mix with the
Decode
in
Headway
2 years ago
PD-related acronyms
I had compiled this list for another forum. Trust it will be helpful for heathunlocked readers, too. BBB = Blood Brain Barrier CD = Carbidopa CD/LD = Comination of carbidopa and levodopa C/L = Carbidopa/levodopa CNS = Central Nervous System CR = Controlled Relase DA = Dopamine agonist DBS
I had compiled this list for another forum. Trust it will be helpful for heathunlocked readers, too. BBB = Blood Brain Barrier CD = Carbidopa CD/LD = Comination of carbidopa and levodopa C/L = Carbidopa/levodopa CNS = Central Nervous System CR = Controlled Relase DA = Dopamine agonist DBS
Bennorca
in
Cure Parkinson's
1 year ago
Recording now available for NoSilverBullet presentation by Dr A Fasano on "DBS, Focused Ultrasound and Infusion Pumps"
Dr. Fasano is Professor of Neurology at the University of Toronto and one of the world leaders in deep brain stimulation. Watch his presentation on YouTube here https://www.youtube.com/watch?v=g5z7tYJrxsU Or listen to it as a podcast on Spotify here https://open.spotify.com/show/6WIgOhwJemjqE2bnDPu44P
Dr. Fasano is Professor of Neurology at the University of Toronto and one of the world leaders in deep brain stimulation. Watch his presentation on YouTube here https://www.youtube.com/watch?v=g5z7tYJrxsU Or listen to it as a podcast on Spotify here https://open.spotify.com/show/6WIgOhwJemjqE2bnDPu44P
Michel0220
in
Cure Parkinson's
1 year ago
Fantastic series of Videos charting one lady’s DBS journey
Produced by Parkinson’s UK, this fantastic series of 10 videos, (to date), charts the journey of Jo Yaldren from thinking about having DBS , through medical assessments, doctors case discussions, tests, meeting with the surgeon and the surgery itself. Very much a personal record with Jo sharing the
Produced by Parkinson’s UK, this fantastic series of 10 videos, (to date), charts the journey of Jo Yaldren from thinking about having DBS , through medical assessments, doctors case discussions, tests, meeting with the surgeon and the surgery itself. Very much a personal record with Jo sharing the
Buckholt
in
Cure Parkinson's
1 year ago
Deep Brain Stimulation
Study from China on Parkinson's patients with RLS showed Deep Brain Stimulation reduced RLS & helped sleep.I certainly wouldn't consider it. Seems too extreme but if the Parkinson's patients are having the treatment to help tremor, it would be sensible to see if stimulation in another area relieves RLS
Study from China on Parkinson's patients with RLS showed Deep Brain Stimulation reduced RLS & helped sleep.I certainly wouldn't consider it. Seems too extreme but if the Parkinson's patients are having the treatment to help tremor, it would be sensible to see if stimulation in another area relieves RLS
Joolsg
in
Restless Legs Syndrome
1 year ago
Driving Licence Application
In Jan 2022 I reapplied for my driving licence having had it revoked due to a brain tumour diagnosis in Dec 2020. I had successful surgery to remove the tumour in Mar 2021 and underwent voluntary radio and chemo therapies, with the latter finishing in Jun this year. My tumour (low grade) caused seizures
In Jan 2022 I reapplied for my driving licence having had it revoked due to a brain tumour diagnosis in Dec 2020. I had successful surgery to remove the tumour in Mar 2021 and underwent voluntary radio and chemo therapies, with the latter finishing in Jun this year. My tumour (low grade) caused seizures
busyfool
in
Headway
2 years ago
brain tumour
Hi, I have a 9mm acoustic neuroma I had a CT scan done this April I was told in July that it has grown but in the last 8 weeks I have had headaches every day and night. I eventually went / got to see my GP who says she is not sure my white cells are down she said she THINKS my CT scan would have
Hi, I have a 9mm acoustic neuroma I had a CT scan done this April I was told in July that it has grown but in the last 8 weeks I have had headaches every day and night. I eventually went / got to see my GP who says she is not sure my white cells are down she said she THINKS my CT scan would have
Ballantyne56
in
Acoustic Neuroma Support
2 years ago
Technical ability of surgeon resulted in poor outcomes in DBS patients
"[i]Electrodes have to be put in the correct place or within 1-2mm, otherwise they can damage a person's speech and balance.[/i] [i]It[/i][i] examined 22 cases involving 21 patients between 2017 and 2019 and found in only three the electrodes were placed in a good position. Five were usable and 13 were
"[i]Electrodes have to be put in the correct place or within 1-2mm, otherwise they can damage a person's speech and balance.[/i] [i]It[/i][i] examined 22 cases involving 21 patients between 2017 and 2019 and found in only three the electrodes were placed in a good position. Five were usable and 13 were
Seamus6
in
Cure Parkinson's
1 year ago
Continuous Electrical Neuromodulation of the Globus Pallidus Intern in Parkinson's Disease by the Directional Electrode
https://clinicaltrials.gov/ct2/show/NCT05626608 The hypothesis is that the efficacy of DBS in directional mode will be more effective on the motor signs of Parkinson's disease compared to omnidirectional stimulation and bipolar mode, with a better tolerance profile (fewer side effects).
https://clinicaltrials.gov/ct2/show/NCT05626608 The hypothesis is that the efficacy of DBS in directional mode will be more effective on the motor signs of Parkinson's disease compared to omnidirectional stimulation and bipolar mode, with a better tolerance profile (fewer side effects).
Hidden
in
Cure Parkinson's
1 year ago
video: GNI Grand Rounds: Deep Brain Stimulation for Parkinson’s Disease: Where we are and where we’re going
https://www.youtube.com/watch?v=i5BcRkcocqY
https://www.youtube.com/watch?v=i5BcRkcocqY
Hidden
in
Cure Parkinson's
1 year ago
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