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Experiences with
Brain arteriovenous malformation (AVM)
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DBS doesn't seem to work?
I had DBS surgery 2 month ago and had 2 programming sessions, but still far from feeling any better. I can say, My tremors and distonia on presurgery status, taking much more medication than before and still having bad days (mostly of them). Does it mean failure of DBS? I don't know what to do. I feel
I had DBS surgery 2 month ago and had 2 programming sessions, but still far from feeling any better. I can say, My tremors and distonia on presurgery status, taking much more medication than before and still having bad days (mostly of them). Does it mean failure of DBS? I don't know what to do. I feel
koshca
in
Cure Parkinson's
4 years ago
Seeking Information
I have joined here today. I have Power of Atorney for my 41 year old son. He suffered a severe Brain bleed caused by a benign tumour He is now left with severe short term memory, plus other related Aquired Brain Injury problems. At 41 he is a very frustrated young man desperate to lead a happier life
I have joined here today. I have Power of Atorney for my 41 year old son. He suffered a severe Brain bleed caused by a benign tumour He is now left with severe short term memory, plus other related Aquired Brain Injury problems. At 41 he is a very frustrated young man desperate to lead a happier life
Saltness
in
Headway
4 years ago
Any studies on longterm effects of live shingles vaccine and PMR
I was wondering if anyone knows of any studies that have been done about those of us that contracted PMR after taking the live shingles vaccine. I wonder if PMR will last as long in our system as the shingles vaccine antibodies are active in our system? The pharmacist says the antibodies last 5+years
I was wondering if anyone knows of any studies that have been done about those of us that contracted PMR after taking the live shingles vaccine. I wonder if PMR will last as long in our system as the shingles vaccine antibodies are active in our system? The pharmacist says the antibodies last 5+years
Linny3
in
PMRGCAuk
4 years ago
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Medication and DBS
Hi all. My husband diagnosed with PD two years ago (almost). He refused to take any medication. It seems PD had some progress. I have a feeling he is now thinking about treatment or medication. He asked me how long usually takes to be on medication before going for DBS. (He is 44years old) Do you
Hi all. My husband diagnosed with PD two years ago (almost). He refused to take any medication. It seems PD had some progress. I have a feeling he is now thinking about treatment or medication. He asked me how long usually takes to be on medication before going for DBS. (He is 44years old) Do you
Parsa
in
Cure Parkinson's
4 years ago
Focused Ultrasound Therapy, FDA-approved for Essential Tremors
Focused ultrasound is a completely non-invasive method of thalamotomy - a procedure in which a predefined small volume of brain tissue containing nerve cells causing the tremor is destroyed - that could be an effective option for certain patients. It is performed while the patient is awake and involves
Focused ultrasound is a completely non-invasive method of thalamotomy - a procedure in which a predefined small volume of brain tissue containing nerve cells causing the tremor is destroyed - that could be an effective option for certain patients. It is performed while the patient is awake and involves
Pa-zzi69
in
Cure Parkinson's
4 years ago
Shingles vaccine
Shingles vaccine. Hi am am ETJak2+, I am unable to have the live shingles vaccine with nhs, but I have read that there is an inert vaccine available. Has anyone had this on the nhs and if so how did you achieve it. Thank you in advance.
Shingles vaccine. Hi am am ETJak2+, I am unable to have the live shingles vaccine with nhs, but I have read that there is an inert vaccine available. Has anyone had this on the nhs and if so how did you achieve it. Thank you in advance.
Hydrox
in
MPN Voice
4 years ago
Viral meningitis last month
Last month, July 2020, I was diagnosed with viral meningitis after being misdiagnosed with covid (by two different md). So it went on for about 11 days before being diagnosed at the tail end of it. Now, a month later I am still having grogginess and eye spots, major fatigue. Several other lingering symptoms
Last month, July 2020, I was diagnosed with viral meningitis after being misdiagnosed with covid (by two different md). So it went on for about 11 days before being diagnosed at the tail end of it. Now, a month later I am still having grogginess and eye spots, major fatigue. Several other lingering symptoms
MrsMagu
in
Meningitis Now
4 years ago
Chemo side effects
Hello, I'm currently on cycle no. 7 (chemo and immunatherapy) for terminal stage 4 lung cancer with 5 more cycles to go and am finding the side effects following treatment are getting worse and it takes me longer to recover. I seem to spend more time feeling rough than anything and somedays I feel like
Hello, I'm currently on cycle no. 7 (chemo and immunatherapy) for terminal stage 4 lung cancer with 5 more cycles to go and am finding the side effects following treatment are getting worse and it takes me longer to recover. I seem to spend more time feeling rough than anything and somedays I feel like
Bailey19260
in
The Roy Castle Lung Cancer Foundation
4 years ago
Seeking some help for my Surgery
I unfortunately suffered a traumatic brain injury in February this year. I had to have a craniotomy to basically save my life with my brain swelling. I was wondering if anybody could help regarding my upcoming surgery and how my life will be afterwards? I have a Cranioplasty 3rd August and was just
I unfortunately suffered a traumatic brain injury in February this year. I had to have a craniotomy to basically save my life with my brain swelling. I was wondering if anybody could help regarding my upcoming surgery and how my life will be afterwards? I have a Cranioplasty 3rd August and was just
PCranston95
in
Headway
4 years ago
Hi! This is my first post. DBS assessment - Has anyone had the same result as my brain MRI test below? If so, what are your symptoms?
Brain MRI test result: Microvascular ischemic disease brain also called White matter disease
Brain MRI test result: Microvascular ischemic disease brain also called White matter disease
Kingdomcome
in
Cure Parkinson's
4 years ago
Langerhans cell histiocytosis
I was diagnosed last year and would like to hear from anyone else diagnosed with lch
I was diagnosed last year and would like to hear from anyone else diagnosed with lch
Mrsclh
in
Lung Conditions Community Forum
4 years ago
Step by Step
I’d like to think the past few day’s have been good. I’ve been going out doing things. I still get weird feelings that freak me out and make me feel like I have a brain tumor or aneurysm.. I just breathe and remind myself that I’ve felt it before. Thoughts are scary- the “what if’s.” I just pray that
I’d like to think the past few day’s have been good. I’ve been going out doing things. I still get weird feelings that freak me out and make me feel like I have a brain tumor or aneurysm.. I just breathe and remind myself that I’ve felt it before. Thoughts are scary- the “what if’s.” I just pray that
anon99
in
Anxiety Support
4 years ago
Sensitivite intestine causing extreme 'off-time' esp after opening bowels
Hello I'm in my ninth year (diagnosed age 37) of living with YOPD. About 16 months ago I suddenly was hit with a new symptom... The mere ingestion of food or even medication tablets would often set of an intense off-time period. Last year I had two separate one week stays in hospital trying to resolve
Hello I'm in my ninth year (diagnosed age 37) of living with YOPD. About 16 months ago I suddenly was hit with a new symptom... The mere ingestion of food or even medication tablets would often set of an intense off-time period. Last year I had two separate one week stays in hospital trying to resolve
DaMoJo
in
Cure Parkinson's
4 years ago
Black dots in eye?
So like my left eye has been dry a lot, and blurry, and I keep getting like little glares of light or a black dot if I blink fast. Ik it sounds dumb, and everyone’s eyes might do it but I know if I go to google it’s going to tell me I have a tumor. And I JUST got all my blood work done, and everything
So like my left eye has been dry a lot, and blurry, and I keep getting like little glares of light or a black dot if I blink fast. Ik it sounds dumb, and everyone’s eyes might do it but I know if I go to google it’s going to tell me I have a tumor. And I JUST got all my blood work done, and everything
DoggieLoverbon
in
Anxiety Support
4 years ago
RYTARY OR SINEMET, WHICH WORKS BEST AND CAUSES MILD OR NO DYSKINESIA OR DYSTONIA?
Hi Friends, Diagnosed as a Yopd patient. I need your honest opinion as regards Rytary and Sinemet,I am roughly 4yrs on this PD journey,and have been on sinemet with less severe side effects,until recently the ''on period'' of Sinemet decreased to 2hrs instead off initial 4 or 3hrs.I then had to dose
Hi Friends, Diagnosed as a Yopd patient. I need your honest opinion as regards Rytary and Sinemet,I am roughly 4yrs on this PD journey,and have been on sinemet with less severe side effects,until recently the ''on period'' of Sinemet decreased to 2hrs instead off initial 4 or 3hrs.I then had to dose
OREOLU
in
Cure Parkinson's
4 years ago
New pinprick blood test for Covid-19 antibodies.
A convenient, low-cost blood test for Covid-19 has been developed by scientists in Wales. Dried blood spot (DBS) samples have been used since the 1960s to test newborn babies for inherited disorders. The antibody test puts a single drop of blood from a skin prick onto specialized filter paper cards
A convenient, low-cost blood test for Covid-19 has been developed by scientists in Wales. Dried blood spot (DBS) samples have been used since the 1960s to test newborn babies for inherited disorders. The antibody test puts a single drop of blood from a skin prick onto specialized filter paper cards
2greys
in
Lung Conditions Community Forum
4 years ago
Meningitis/encephalitis/brain illness
To all you wonderful people who have suffered with all types of this debilitating illness, did you know that you come under The Mental Health umbrella????? Mainly because your brain doesn't function properly? Poor memories ,mixed ones, lost ones, you need to ask the people close to you to be honest and
To all you wonderful people who have suffered with all types of this debilitating illness, did you know that you come under The Mental Health umbrella????? Mainly because your brain doesn't function properly? Poor memories ,mixed ones, lost ones, you need to ask the people close to you to be honest and
Hexy
in
Meningitis Now
4 years ago
Lung surgery Bi-lobectomy
Hi everyone just to give you an update I went to see my consultant today who advised from the biopsy I had I have a benign tumour in my bronchial tube. As the blockage is now causing me to have infections. I was advised surgery is my best option. I was able to see the surgeon why I was at the hospital
Hi everyone just to give you an update I went to see my consultant today who advised from the biopsy I had I have a benign tumour in my bronchial tube. As the blockage is now causing me to have infections. I was advised surgery is my best option. I was able to see the surgeon why I was at the hospital
Becky130777
in
The Roy Castle Lung Cancer Foundation
4 years ago
Cervical myelopathy fusion
Hi I have an operation coming up at some time in the near future for cervical myelopathy, it was due to go ahead before the coronavirus outbreak but got cancelled, I’m having a cervical fusion in c5/6 I already have c3/4 fused already due to a neck defect I was born with, has anybody had the operation
Hi I have an operation coming up at some time in the near future for cervical myelopathy, it was due to go ahead before the coronavirus outbreak but got cancelled, I’m having a cervical fusion in c5/6 I already have c3/4 fused already due to a neck defect I was born with, has anybody had the operation
Dozydora71
in
Pain Concern
4 years ago
Any other PD people out there...your major PD symptom is toes curling up on both feet
Hi to everyone. I haven't signed in for awhile, so I hope all is well with everyone. The last time I signed in, I was going in for my first colonoscopy (April/May of 2019)...and I am happy to say that I got a clean bill of health for my colon and don't have to go back in for colonoscopy for 10 years
Hi to everyone. I haven't signed in for awhile, so I hope all is well with everyone. The last time I signed in, I was going in for my first colonoscopy (April/May of 2019)...and I am happy to say that I got a clean bill of health for my colon and don't have to go back in for colonoscopy for 10 years
willason
in
Cure Parkinson's
4 years ago
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