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Brain arteriovenous malformation (AVM)
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Shingles vaccineM
Many thanks to all who answered my queries about having the shingles vaccine. I had the jab last week with absolutely. NO side effects not even a sore arm !! I know we all different and react differently but hope that my experience helps . Many thanks for all your help and support
Many thanks to all who answered my queries about having the shingles vaccine. I had the jab last week with absolutely. NO side effects not even a sore arm !! I know we all different and react differently but hope that my experience helps . Many thanks for all your help and support
CAROL-R
in
Hughes Syndrome APS Forum
3 years ago
Take part in our Improving Brain Tumour Care Surveys today!
“As my family and I have been through this experience, we have learnt so much and now understand more. So I think it’s really important to share this knowledge with others in order to make progress. It will improve the lives of others who are either directly or indirectly affected by a brain tumour both
“As my family and I have been through this experience, we have learnt so much and now understand more. So I think it’s really important to share this knowledge with others in order to make progress. It will improve the lives of others who are either directly or indirectly affected by a brain tumour both
Jane_TBTC
Volunteer
in
Acoustic Neuroma Support
3 years ago
Botox success for dystonia; how long did it last ?… and other ?’s
It’s been a long time since I approached this site. I just got overwhelmed with the summation of the pandemic, the environment, the degradation of our political leadership and my own 20+ years of declining success with living the life of PIGD pd. However I’m faced with an acceleration of the decline
It’s been a long time since I approached this site. I just got overwhelmed with the summation of the pandemic, the environment, the degradation of our political leadership and my own 20+ years of declining success with living the life of PIGD pd. However I’m faced with an acceleration of the decline
etterus
in
Cure Parkinson's
3 years ago
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Cranioplasty date has been set, any advice gratefully received
So my husbands cranioplasty date has come through for the beginning of August. He is 13 months post his aneurysm surgery which resulted in a massive stroke and craniotomy. He has been home 2 months and is pretty much bedbound. He struggles with sitting balance, in fact I think he would just topple
So my husbands cranioplasty date has come through for the beginning of August. He is 13 months post his aneurysm surgery which resulted in a massive stroke and craniotomy. He has been home 2 months and is pretty much bedbound. He struggles with sitting balance, in fact I think he would just topple
pozza40
in
Headway
3 years ago
FUS PTT Surgery. 6 months update
After 6 months things look bit more stable. I still have some issues, and sometimes it is still hard to accept that i still have Parkinson’s. 6 months gone, and gone all my dyskinesia. Still have some tremor, 90% solved on my treated side, about 80% on my untreated side, slowness it is still one of the
After 6 months things look bit more stable. I still have some issues, and sometimes it is still hard to accept that i still have Parkinson’s. 6 months gone, and gone all my dyskinesia. Still have some tremor, 90% solved on my treated side, about 80% on my untreated side, slowness it is still one of the
Markbit
in
Cure Parkinson's
3 years ago
Shingles Vaccine
I have just been offered the Shingles Vaccine and have concerns about having it as it's alive vaccine as I understand people with APS should avoid live vaccines. Has anyone had this vaccine and was there any side effects .
I have just been offered the Shingles Vaccine and have concerns about having it as it's alive vaccine as I understand people with APS should avoid live vaccines. Has anyone had this vaccine and was there any side effects .
CAROL-R
in
Hughes Syndrome APS Forum
3 years ago
Using 7 tesla MRI power for DBS “The first time I ... showed the neurosurgeon the images, it was like turning on a light in a dark room."
They are still making dramatic improvements in DBS. "The problem with this promising therapy ... is that not every patient receives a video-worthy benefit. “There’s a big distribution of the quality of outcomes that patients actually get from DBS—in some cases, it can even cause more side effects than
They are still making dramatic improvements in DBS. "The problem with this promising therapy ... is that not every patient receives a video-worthy benefit. “There’s a big distribution of the quality of outcomes that patients actually get from DBS—in some cases, it can even cause more side effects than
MBAnderson
in
Cure Parkinson's
3 years ago
Do you continue taking B1 Thiamin HCL, High Dose Therapy (HDT)?
I’m wondering if HDT benefits after having had DBS surgery. What are you thoughts?
I’m wondering if HDT benefits after having had DBS surgery. What are you thoughts?
Kingdomcome
in
Cure Parkinson's
3 years ago
WHERE WILL I FIND DBS POSTINGS
I am assuming there are a lot of postings
I am assuming there are a lot of postings
powerfemale
in
Cure Parkinson's
3 years ago
I have both Vm and bm and I’m so confused
I’m in hospital currently with viral meningitis I came in Monday morning (4days ago) with a severe headache that sold had for two days and knew want right, day two after a lumber puncture I was told I had viral meningitis. Today I was told I also was showing in my results signs of bacterial meningitis
I’m in hospital currently with viral meningitis I came in Monday morning (4days ago) with a severe headache that sold had for two days and knew want right, day two after a lumber puncture I was told I had viral meningitis. Today I was told I also was showing in my results signs of bacterial meningitis
Mrsmoran2be
in
Meningitis Now
3 years ago
meningitis vaccine ca125
Good Afternoon Ladies - I just wanted to check in if anyone has had the meningitis vaccine and then had an increase in their CA125.
Good Afternoon Ladies - I just wanted to check in if anyone has had the meningitis vaccine and then had an increase in their CA125.
Lind58
in
My Ovacome
3 years ago
Abdomen, Severe distension and bloatingAbdomen
Abdomen, Severe distension and bloating I am not constipated, but abdomen is as tight as a drum with pain (6-7), Seems nothing helps, Have tried Bisacodyl, Miralax laxatives with no effect. Also have violent shake of L-Hand. Global neuropathy, Neuro has suggested DBS for shaking. GI doctor has
Abdomen, Severe distension and bloating I am not constipated, but abdomen is as tight as a drum with pain (6-7), Seems nothing helps, Have tried Bisacodyl, Miralax laxatives with no effect. Also have violent shake of L-Hand. Global neuropathy, Neuro has suggested DBS for shaking. GI doctor has
gl2238
in
Cure Parkinson's
3 years ago
Am I losing my mind?
Hello, I had DBS surgery about 6 weeks ago. And I have so much anxiety and panic attacks throughout the day it’s unbearable. Is this psychosis? If so, how is it manageable?? My thyroid panel doesn’t show a hyperthyroid so I’m good there but I can’t seem to be able to control my anxiety. Everything sets
Hello, I had DBS surgery about 6 weeks ago. And I have so much anxiety and panic attacks throughout the day it’s unbearable. Is this psychosis? If so, how is it manageable?? My thyroid panel doesn’t show a hyperthyroid so I’m good there but I can’t seem to be able to control my anxiety. Everything sets
fossygma
in
Cure Parkinson's
3 years ago
What improvements can we anticipate within 10-15 years?
I am not seeking false hope nor do I want to perpetuate it but I do think there will be more treatments within the next 10-15 years. A off the top of my head list: There may be stem cells for PWP. Perhaps intravenous like the UT trial. There may be personalized cell therapy (pluripotent neurons
I am not seeking false hope nor do I want to perpetuate it but I do think there will be more treatments within the next 10-15 years. A off the top of my head list: There may be stem cells for PWP. Perhaps intravenous like the UT trial. There may be personalized cell therapy (pluripotent neurons
Hidden
in
Cure Parkinson's
3 years ago
Is it safe to have Shingles jab?
Hi everyone, have now been off Pred for six months after having Pmr for nearly seven years. I have been offered a shingles jab, but am reluctant to have it in case my immune system is still low, or it causes pmr to rear it's ugly head again Could I have advice please. Thank you, Jenny x
Hi everyone, have now been off Pred for six months after having Pmr for nearly seven years. I have been offered a shingles jab, but am reluctant to have it in case my immune system is still low, or it causes pmr to rear it's ugly head again Could I have advice please. Thank you, Jenny x
Attic
in
PMRGCAuk
3 years ago
Finally meet my MDS after my FUS surgery
I went to see my MDS two days ago, 4 months after my PTT FUS surgery and he was really happy with the results. He opposed initially and tried to convence me to go through DBS, but he was very pleased with my evolution. He advised me i should up l-dopa a bit, what i'm trying adding mucuna, and i feel
I went to see my MDS two days ago, 4 months after my PTT FUS surgery and he was really happy with the results. He opposed initially and tried to convence me to go through DBS, but he was very pleased with my evolution. He advised me i should up l-dopa a bit, what i'm trying adding mucuna, and i feel
Markbit
in
Cure Parkinson's
3 years ago
Benjamin Stecher About To Undergo DBS
I'm not posting this to start a debate about the merits of Deep Brain Stimulation (DBS), but I do hope we all keep Benjamin Stecher in our thoughts as he is about to undergo DBS. Benjamin was diagnosed with Parkinson’s Disease approximately eight years ago, at the age of 29. Since then, he has been
I'm not posting this to start a debate about the merits of Deep Brain Stimulation (DBS), but I do hope we all keep Benjamin Stecher in our thoughts as he is about to undergo DBS. Benjamin was diagnosed with Parkinson’s Disease approximately eight years ago, at the age of 29. Since then, he has been
jimcaster
in
Cure Parkinson's
3 years ago
Problems immediately after DBS surgery , pls help
Me omg , i am having a horrible reaction to dbs surgery, what in the world is going on??? symptom's i never had before are present, what in the hell is going on here? frozen with anxiety, other horrible weird symptom's i just pray to go home to my savior. anyone have a bad outcome from the surgery
Me omg , i am having a horrible reaction to dbs surgery, what in the world is going on??? symptom's i never had before are present, what in the hell is going on here? frozen with anxiety, other horrible weird symptom's i just pray to go home to my savior. anyone have a bad outcome from the surgery
fossygma
in
Cure Parkinson's
3 years ago
Chi machine?
Has anyone used a Chi Machine? A man at my church who has Parkinson's said he used to use the machine to help him sleep. (He had Deep Brain Stimulation and is now doing really well. No more tremors and his sleep is much better so it sounds like he doesn't use the Chi Machine any more.)
Has anyone used a Chi Machine? A man at my church who has Parkinson's said he used to use the machine to help him sleep. (He had Deep Brain Stimulation and is now doing really well. No more tremors and his sleep is much better so it sounds like he doesn't use the Chi Machine any more.)
kicker2
in
Restless Legs Syndrome
3 years ago
PTT FUS 4 months later
I had today my 3 months phone consultation with Prof. J. (one month later). He saw my videos, with and without levodopa e said that i was "very close to normal". Indeed, sometimes i feel close to normal, not everyday, not every hour, but especially in the morning i feel like that. I am able to run again
I had today my 3 months phone consultation with Prof. J. (one month later). He saw my videos, with and without levodopa e said that i was "very close to normal". Indeed, sometimes i feel close to normal, not everyday, not every hour, but especially in the morning i feel like that. I am able to run again
Markbit
in
Cure Parkinson's
3 years ago
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