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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
5 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
5 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
5 months ago
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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
5 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
6 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
6 months ago
The problematic 2nd dose of the day
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
jeeves19
in
Cure Parkinson's
6 months ago
DBS awake or under general anesthesia
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
gingerj
in
Cure Parkinson's
6 months ago
Collagen powder and increased stiffness?
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
1rocketman
in
Cure Parkinson's
6 months ago
#1 Symptom Reducer
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
staceysack
in
Cure Parkinson's
6 months ago
Shingles.
I have always posted about my Afib and cardioablation. And all you nice people have helped me immensely. But now I'm going through another matter. Thirteen days ago I came down with shingles. The rash started on my back around my left shoulder blade and moved under my arm and onto my left breast. I can
I have always posted about my Afib and cardioablation. And all you nice people have helped me immensely. But now I'm going through another matter. Thirteen days ago I came down with shingles. The rash started on my back around my left shoulder blade and moved under my arm and onto my left breast. I can
mlp3434
in
AF Association
6 months ago
Travel vaccinations
I’m travelling to Bali in April and been recommended to have Typhoid, Tetanus and Hepatitis A boosters. Has anyone experienced any issues following these vaccinations please? Currently on 0.5mg Pred and no intention of reducing further until after the holiday!
I’m travelling to Bali in April and been recommended to have Typhoid, Tetanus and Hepatitis A boosters. Has anyone experienced any issues following these vaccinations please? Currently on 0.5mg Pred and no intention of reducing further until after the holiday!
Dorothy61
in
PMRGCAuk
6 months ago
DBS??
I’m seriously considering DBS. Would love some feedback from people who have had it done.
I’m seriously considering DBS. Would love some feedback from people who have had it done.
CostaVal
in
Cure Parkinson's
6 months ago
addicted to C/L?
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
limcheeese22
in
Cure Parkinson's
6 months ago
DBS. Did it improve your life as much as you hoped?
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
gingerj
in
Cure Parkinson's
6 months ago
Shingles pain
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
FinneUK
in
Thyroid UK
7 months ago
Tingling
HiI have had three lots of brain surgery, the latest being a cranioplasty and clipping of an aneurysm. I am suffering with extreme tingling especialy down one side of my body. Has anybody else experienced this
HiI have had three lots of brain surgery, the latest being a cranioplasty and clipping of an aneurysm. I am suffering with extreme tingling especialy down one side of my body. Has anybody else experienced this
EHJF
in
Headway
11 months ago
Is Low Dose Naltrexone (LDN) effective for Lyme disease?
Is Low Dose Naltrexone (LDN) effective for Lyme disease? Pharmacist Stephen Dickson, LDN Specialist https://youtu.be/teTB13xQsq0?si=twYmXSvKO6YlNElO
Is Low Dose Naltrexone (LDN) effective for Lyme disease? Pharmacist Stephen Dickson, LDN Specialist https://youtu.be/teTB13xQsq0?si=twYmXSvKO6YlNElO
Shewulf
Administrator
in
LDN Research Trust
7 months ago
Drinking because im grieving
When they eventually diagnosed him with cancer it was too late and it had spread to stomach, oesophagus, lymph nodes and his
brain
. His
death
was traumatic.
When they eventually diagnosed him with cancer it was too late and it had spread to stomach, oesophagus, lymph nodes and his
brain
. His
death
was traumatic.
Itsforhim123
in
Bereavement Care & Share
4 months ago
I’m scheduled to have DBS surgery February 29 - if you have had DBS, is there anything you wish you‘d known beforehand?
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
Megafone
in
Cure Parkinson's
7 months ago
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