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Brain arteriovenous malformation (AVM)
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DBS operation
I’ve been approved by Kaiser for a DBS (Deep Brain Stimulation) operation for my MS/essential tremors. Would like to talk to someone who’s had the same operation. I need to know: About your experience during the operation, Post operation pain & discomfort The after care involved The after
I’ve been approved by Kaiser for a DBS (Deep Brain Stimulation) operation for my MS/essential tremors. Would like to talk to someone who’s had the same operation. I need to know: About your experience during the operation, Post operation pain & discomfort The after care involved The after
Potatoskins
in
My MSAA Community
5 months ago
Shingles vaccine
Just got a phone call from GP booking me in for my shingles vaccine as I fit the criteria.Has anyone had any experience of the jab. Do I need to ask Rheumatology about changing my tcz infusion times . Thanks , I not after medical advice just whether you personally had to adjust your drip timings. I
Just got a phone call from GP booking me in for my shingles vaccine as I fit the criteria.Has anyone had any experience of the jab. Do I need to ask Rheumatology about changing my tcz infusion times . Thanks , I not after medical advice just whether you personally had to adjust your drip timings. I
allanah
in
NRAS
5 months ago
Any info or experience with light headedness and circulation issues with PD?
My husband has PD, 9 years in, He had DBS surgery a year ago and that has been a miraculous positive change, however he has this symptom of getting really lightheaded when going from sitting to standing or any quick movements, ( he passed out a while ago and hit his head) or happens like playing pickleball
My husband has PD, 9 years in, He had DBS surgery a year ago and that has been a miraculous positive change, however he has this symptom of getting really lightheaded when going from sitting to standing or any quick movements, ( he passed out a while ago and hit his head) or happens like playing pickleball
whitdemo
in
Cure Parkinson's
5 months ago
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Next NoSilverBullet Zoom Webinar on 13 May: Live interview of Dr M Okun on "Practical strategies for living a happier life with Parkinson's"
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7pm London time on Monday, the 13th of May. I will have the pleasure of interviewing Dr Michael Okun on the topic of "Practical strategies for living a happier life with Parkinson's". Dr Okun is a worldwide
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7pm London time on Monday, the 13th of May. I will have the pleasure of interviewing Dr Michael Okun on the topic of "Practical strategies for living a happier life with Parkinson's". Dr Okun is a worldwide
Michel0220
in
Cure Parkinson's
5 months ago
Very interesting video on controversial issues regarding managing Parkinson’s at different stages (from 2 guys that seem smart).
Controversies in the Use of Medications, Herbs, and Early DBS for Parkinson's April 2024:
https://youtu.be/RhaUZFczGmc?si=R0Nb5tfh3jFnvZdg Movement Disorders Foundation of Arizona: Movement disorders neurologists Dr. Paarth Shah and Dr. Virgilio Gerald Evidente will be discussing in a panel discussion
Controversies in the Use of Medications, Herbs, and Early DBS for Parkinson's April 2024:
https://youtu.be/RhaUZFczGmc?si=R0Nb5tfh3jFnvZdg Movement Disorders Foundation of Arizona: Movement disorders neurologists Dr. Paarth Shah and Dr. Virgilio Gerald Evidente will be discussing in a panel discussion
Bolt_Upright
in
Cure Parkinson's
5 months ago
apomorphine, anyone on this?
Hi all, was offered apomorphine with pump not injection. is anyone using this and has it made a difference i know everyone is different just trying to get a bit of perspective before i start it? been having issues with oral forms of medication either dyskinetic on or cant move off not much in the middle
Hi all, was offered apomorphine with pump not injection. is anyone using this and has it made a difference i know everyone is different just trying to get a bit of perspective before i start it? been having issues with oral forms of medication either dyskinetic on or cant move off not much in the middle
Todd-pw
in
Cure Parkinson's
5 months ago
Does anyone with LUPUS get reoccurring Shingles/ Herpes Zoster infections?
So I am waiting to be diagnosed with Lupus/ Mix Connective Tissue Disease. I have a lot of the symptoms for lupus like the face rash, other rashes on my body. Severing from fatigue, mouth ulcers really bad migraines. My body gets swollen and holds a lot of fluid. Joint pain as well as stomach issues.
So I am waiting to be diagnosed with Lupus/ Mix Connective Tissue Disease. I have a lot of the symptoms for lupus like the face rash, other rashes on my body. Severing from fatigue, mouth ulcers really bad migraines. My body gets swollen and holds a lot of fluid. Joint pain as well as stomach issues.
Severancered9
in
LUPUS UK
5 months ago
Meds not working well again
My PD husband and has been taking 4 or 5 sinemet 50/250 CR for about a year and started using neuropro patch 2mg 6 months ago. He was on madopar for several years prior, but it was never right for him. Suddenly it seems his meds aren't working and the pd symptoms are severe again. The neurologist
My PD husband and has been taking 4 or 5 sinemet 50/250 CR for about a year and started using neuropro patch 2mg 6 months ago. He was on madopar for several years prior, but it was never right for him. Suddenly it seems his meds aren't working and the pd symptoms are severe again. The neurologist
PDsux_10
in
Cure Parkinson's
6 months ago
Shingles jab refused, ( immune suppressed )
I was 64 ( Oct 2023 ) i inquired about the shingles jab, but was refused ???
I was 64 ( Oct 2023 ) i inquired about the shingles jab, but was refused ???
alast1959
in
NRAS
6 months ago
AFib after 2nd Shingles jab
I only occasionally get Afib now following an ablation in 2020, but I had my 2nd shingles jab 3 days ago and it seems to have kicked off my afib again albeit not constantly. I just wondered if anyone else has had the same effect from the 2nd jab (as it is supposedly worse than the 1st) or is it just
I only occasionally get Afib now following an ablation in 2020, but I had my 2nd shingles jab 3 days ago and it seems to have kicked off my afib again albeit not constantly. I just wondered if anyone else has had the same effect from the 2nd jab (as it is supposedly worse than the 1st) or is it just
destiny234
in
Atrial Fibrillation Support
6 months ago
deep brain stimulation
I am considering DBS. Please share any experiences and outcomes that may help me make the decision to whether or not… thanks in advance!
I am considering DBS. Please share any experiences and outcomes that may help me make the decision to whether or not… thanks in advance!
DonnaMc1968
in
Cure Parkinson's
6 months ago
filgotinib and shingles,
hi everyone Just getting over last 2 weeks of awful shingles ,my god painful or what!! As I am on filgotinib and it lists side effect can be reactivation of shingles virus,I can only assume it is that.Has anyone else had shingles while on any of the JAK meds? Pharmacist prescribed antivirals within
hi everyone Just getting over last 2 weeks of awful shingles ,my god painful or what!! As I am on filgotinib and it lists side effect can be reactivation of shingles virus,I can only assume it is that.Has anyone else had shingles while on any of the JAK meds? Pharmacist prescribed antivirals within
Doodlereggie
in
NRAS
6 months ago
Tremor Assessment
Has anyone had a tremor assessment prior to deep brain stimulation?
Has anyone had a tremor assessment prior to deep brain stimulation?
Ostap
in
Ataxia UK
6 months ago
DBS: Medtronic question re. voice
Hi everyone. As many of you know I had DBS last August. Didn’t reverse my symptoms 5 years as was touted by my neuro but patched me up to fight another couple of rounds. When I was switched on, after a day or so I noticed that it was much harder to speak: volume and articulacy were much harder to produce
Hi everyone. As many of you know I had DBS last August. Didn’t reverse my symptoms 5 years as was touted by my neuro but patched me up to fight another couple of rounds. When I was switched on, after a day or so I noticed that it was much harder to speak: volume and articulacy were much harder to produce
jeeves19
in
Cure Parkinson's
6 months ago
Insomnia
Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
carlosgarcia2048
in
Cure Parkinson's
6 months ago
anti NMDA encephalitis
Hi! My husband had HSV1 encephalitis in March-April 2023, then anti NMDA encephalitis May-August 2023. He had the steroids, the plasma exchange but it was the Rituximab that finally got it sorted. I’m just looking to connect with anyone that has suffered with it or their families?! We don’t have
Hi! My husband had HSV1 encephalitis in March-April 2023, then anti NMDA encephalitis May-August 2023. He had the steroids, the plasma exchange but it was the Rituximab that finally got it sorted. I’m just looking to connect with anyone that has suffered with it or their families?! We don’t have
AntiNMDAWarriorWife
in
Headway
7 months ago
AbbVie’s Produodopa approved by SMC to treat Parkinson’s disease patients in Scotland
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
Farooqji
in
Cure Parkinson's
7 months ago
A Shingrix thank you
Hi, I just wanted to thank so many of you who have spoken of your side effects with the second Shingrix, yet being worth it. It was when I recently read here that being only half vaccinated was still being open to Shingles that spurred me into getting the second one today, after 2 1/2 years. After
Hi, I just wanted to thank so many of you who have spoken of your side effects with the second Shingrix, yet being worth it. It was when I recently read here that being only half vaccinated was still being open to Shingles that spurred me into getting the second one today, after 2 1/2 years. After
Schubert1870
in
CLL Support
7 months ago
pain?
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
ottercat
in
Cure Parkinson's
7 months ago
Recurrent meningitis
Hi, I'm looking to connect or share experiences with anyone who has had multiple cases of meningitis and is currently at risk of meningitis due to a csf leak? My csf leak is from a traumatic injury and I've had 3 surgical attempts to fix the leak. I've had 2 cases of meningitis, and both were before
Hi, I'm looking to connect or share experiences with anyone who has had multiple cases of meningitis and is currently at risk of meningitis due to a csf leak? My csf leak is from a traumatic injury and I've had 3 surgical attempts to fix the leak. I've had 2 cases of meningitis, and both were before
SunflowerGirl
in
Meningitis Now
7 months ago
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