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Brain arteriovenous malformation (AVM)
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Just been diagnosed with shingles
I have Lupus, sarcoidosis, rheumatoid arthritis, eye and skin sensitivity, I've also been treated for breast cancer so I'm on tamoxifen, hydroxychloroquine, prednisolone, mycophenalate and I now have to stop all these dead apart from the tamoxifen to take the anti virals because I have shingles. I'm
I have Lupus, sarcoidosis, rheumatoid arthritis, eye and skin sensitivity, I've also been treated for breast cancer so I'm on tamoxifen, hydroxychloroquine, prednisolone, mycophenalate and I now have to stop all these dead apart from the tamoxifen to take the anti virals because I have shingles. I'm
EHSs
in
LUPUS UK
6 years ago
Pilot study finds that DBS slows the progression of resting tremor in early-stage PD
“The field of DBS therapy for Parkinson’s disease is moving toward earlier stages of treatment ...” ParkinsonsNewsToday article: https://parkinsonsnewstoday.com/2018/07/05/dbs-shows-potential-to-ease-tremors-in-early-stage-parkinsons-patients-in-pilot-study/ Research paper (not
“The field of DBS therapy for Parkinson’s disease is moving toward earlier stages of treatment ...” ParkinsonsNewsToday article: https://parkinsonsnewstoday.com/2018/07/05/dbs-shows-potential-to-ease-tremors-in-early-stage-parkinsons-patients-in-pilot-study/ Research paper (not
jeffreyn
in
Cure Parkinson's
6 years ago
New Boston Scientific DBS machine, anyone tried it?
I've been doing research on the BOSTON SCIENTIFIC DBS machine. 400 people in the US have gotten it installed since Jan. 2018. 4000 in Europe. It sounds pretty interesting - less side effects. I'm a bit scared to get it done. Hoping someone out there has had experience with it. Love to hear about
I've been doing research on the BOSTON SCIENTIFIC DBS machine. 400 people in the US have gotten it installed since Jan. 2018. 4000 in Europe. It sounds pretty interesting - less side effects. I'm a bit scared to get it done. Hoping someone out there has had experience with it. Love to hear about
ktbate
in
Cure Parkinson's
6 years ago
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anyone had a nerve block procedure done?
my son had an accident 18 months ago boxing. His recovery has been slow , recent mri scans are good and now his neuro has told him he has "nerve damage" . He is on amitripyline and gabapetin . On monday he is having a "nerve block" procedure which will be injected into the base of his skull , has anyone
my son had an accident 18 months ago boxing. His recovery has been slow , recent mri scans are good and now his neuro has told him he has "nerve damage" . He is on amitripyline and gabapetin . On monday he is having a "nerve block" procedure which will be injected into the base of his skull , has anyone
joben45
in
Headway
6 years ago
Anyone out there who had DBS for 10 years or more
I'm hearing different views about the longevity of DBS. has this been covered before and can anyone out there who had DBS for more than 10 years comment / share his or her views?
I'm hearing different views about the longevity of DBS. has this been covered before and can anyone out there who had DBS for more than 10 years comment / share his or her views?
Xabojuro2
in
Cure Parkinson's
6 years ago
Mom of triplets, spouse with Parkinson’s
Hi, I literally just found this place. It’s a bit of a relief. I’m in a place in my mind that is confusing, because I can’t predict what’s going to happen next, I can’t figure out if it’s him or the disease. One day it’s one thing, then a couple days later it’ll be something else. He’s had this disease
Hi, I literally just found this place. It’s a bit of a relief. I’m in a place in my mind that is confusing, because I can’t predict what’s going to happen next, I can’t figure out if it’s him or the disease. One day it’s one thing, then a couple days later it’ll be something else. He’s had this disease
3Fishies
in
Cure Parkinson's
6 years ago
Shingles
Oh wise ones - please give me some advice. I am due to spend my usual Wednesday with my almost 98 year old mother tomorrow but I’ve just phoned her to confirm arrangements only to be told she has developed shingles, poor thing. Now, I’ve just been reading up about it and it seems to me that you can’t
Oh wise ones - please give me some advice. I am due to spend my usual Wednesday with my almost 98 year old mother tomorrow but I’ve just phoned her to confirm arrangements only to be told she has developed shingles, poor thing. Now, I’ve just been reading up about it and it seems to me that you can’t
LizzieGuinn
in
PMRGCAuk
6 years ago
DBS or : No DBS : Please share your story by taking part in this survey https://surveyhero.com/c/9147d280
results will be published here https://tinyurl.com/yaqkvjlk I'm lined up for DBS and I'm going through a period they call 'working up' which will test my readiness and ability to live with electrodes in my head and a battery buried into my chest. my family, colleagues and friends are divided on what
results will be published here https://tinyurl.com/yaqkvjlk I'm lined up for DBS and I'm going through a period they call 'working up' which will test my readiness and ability to live with electrodes in my head and a battery buried into my chest. my family, colleagues and friends are divided on what
Xabojuro2
in
Cure Parkinson's
6 years ago
Wow, this Inversion Table is interesting! New member here!
Diagnose with PD in 2004. Had DBS surgery in 2016 and it was literally a Godsend! Totally eliminated the hand tremors which had become significant! Hit the gym EVERY morning 7 days a week with emphasis on cardio-vascular! Now my problem is "freezing of gate." However after getting my Teeter Inversion
Diagnose with PD in 2004. Had DBS surgery in 2016 and it was literally a Godsend! Totally eliminated the hand tremors which had become significant! Hit the gym EVERY morning 7 days a week with emphasis on cardio-vascular! Now my problem is "freezing of gate." However after getting my Teeter Inversion
boydbill
in
Cure Parkinson's
6 years ago
DBS SURGERY
i am now celebrating six months since my DBS surgery. This surgery for me has truly been a gift of life renewed. If you are thinking about exploring this option and would like to hear more about it or have specific fears or questions, I would love to help. I, too, was afraid of having the surgery,
i am now celebrating six months since my DBS surgery. This surgery for me has truly been a gift of life renewed. If you are thinking about exploring this option and would like to hear more about it or have specific fears or questions, I would love to help. I, too, was afraid of having the surgery,
annmariebaird
in
Cure Parkinson's
6 years ago
Depression/Loneliness after brain surgery.
I am four years post operation from having a brain tumour removed when I was 17. I developed epilepsy and lost half my eyesight as side effects to the operation. Although very lucky to be here, I feel guilt that I have been given a second shot at life and I am not enjoying it. I have seeked help with
I am four years post operation from having a brain tumour removed when I was 17. I developed epilepsy and lost half my eyesight as side effects to the operation. Although very lucky to be here, I feel guilt that I have been given a second shot at life and I am not enjoying it. I have seeked help with
BethVictoria
in
Headway
6 years ago
My trip to Viterbo to see Dr. Antonio Constantini -Sharing info
I will use this post to share information about my recent Dr Antonio Constantini 's visit. I am a little bit busy at work and will not have the time to write it all up on in one session. so bear with me, please. in the meantime please ask questions and I will do my first answer. sections of this post
I will use this post to share information about my recent Dr Antonio Constantini 's visit. I am a little bit busy at work and will not have the time to write it all up on in one session. so bear with me, please. in the meantime please ask questions and I will do my first answer. sections of this post
Xabojuro2
in
Cure Parkinson's
6 years ago
Feeling worried ... brain tumour?
Head feels tight when I bend down and get up kind of like a head rush and ears feel muffled and also when I jump in bed and lay straight down on my stomach and look up I get the same thing but it only lasts for like 10 seconds. I’m worried I have POTS disease or a brain tumour
Head feels tight when I bend down and get up kind of like a head rush and ears feel muffled and also when I jump in bed and lay straight down on my stomach and look up I get the same thing but it only lasts for like 10 seconds. I’m worried I have POTS disease or a brain tumour
butterflyz01
in
Anxiety Support
6 years ago
If it's not Chickenpox or Shingles...
I was diagnosed with phoritic RA ( as well as all the other arthritis ) put on a high dose of mexitrate by injection . Anyhow, broke out in a horrible rash on my hands and arms. Went to the chemist, they said heat rash and flogged me antihistamines. Rash continued to be really painful and incredibly
I was diagnosed with phoritic RA ( as well as all the other arthritis ) put on a high dose of mexitrate by injection . Anyhow, broke out in a horrible rash on my hands and arms. Went to the chemist, they said heat rash and flogged me antihistamines. Rash continued to be really painful and incredibly
Mcdebz
in
NRAS
6 years ago
Effects of meningitis
Does people with the TB meningitis get (chronic granulomatous lymphadenitis) swelling in the neck forming pus. Does it will cure on it's own? Or it needs a surgery
Does people with the TB meningitis get (chronic granulomatous lymphadenitis) swelling in the neck forming pus. Does it will cure on it's own? Or it needs a surgery
Vissusaila
in
Meningitis Now
6 years ago
Brain Surgery Anyone?
I’m 28 w TRD and just went for a screening to see if I qualify for a clinical trial of Deep Brain Stimulation (DBS). DBS is brain surgery where they implant a device in your brain -it looks like a meat probe thermometer- and it sends small electrical impulses to your brain and alleviates depression.
I’m 28 w TRD and just went for a screening to see if I qualify for a clinical trial of Deep Brain Stimulation (DBS). DBS is brain surgery where they implant a device in your brain -it looks like a meat probe thermometer- and it sends small electrical impulses to your brain and alleviates depression.
ZenGiraffe
in
Anxiety and Depression Support
6 years ago
Post Traumatic Amnesia with Anoxic Brain Injuries
Does anyone have any experience with this? My boyfriend is still in PTA after one month at inpatient rehab but I know anoxic brain injuries take a longer amount of time too
Does anyone have any experience with this? My boyfriend is still in PTA after one month at inpatient rehab but I know anoxic brain injuries take a longer amount of time too
kiloriley
in
Headway
6 years ago
Viral Meningitis
I had viral meningitis with Influenza B in March 2018. I have had a horrible headache everyday since then. I also have major cognitive problems and I have trouble walking. I also was diagnosed with Chiari malformation but the doctor said I had it since childhood and that wasn’t the problem. I am off
I had viral meningitis with Influenza B in March 2018. I have had a horrible headache everyday since then. I also have major cognitive problems and I have trouble walking. I also was diagnosed with Chiari malformation but the doctor said I had it since childhood and that wasn’t the problem. I am off
buttons2ct
in
Meningitis Now
6 years ago
Tasigna (Nilotinib) as a treatment/cure for SCA?
Hi, I am wondering if anyone has tried Tasigna (Nilotinib - FDA-approved treatment for cancer of the white blood cells) as a treatment/cure for cerebellar ataxia. There has been a recent study by renowned researchers in South Korea: https://www.ncbi.nlm.nih.gov/pubmed/28601294 Some people in Korea
Hi, I am wondering if anyone has tried Tasigna (Nilotinib - FDA-approved treatment for cancer of the white blood cells) as a treatment/cure for cerebellar ataxia. There has been a recent study by renowned researchers in South Korea: https://www.ncbi.nlm.nih.gov/pubmed/28601294 Some people in Korea
Goodlifee
in
Ataxia UK
6 years ago
BRAIN TUMOR FEAR AND CONCERNED - PLEASE HELP ME!!!!
Hi all I am going to just come out and say it - I think I have a brain tumor! I have never suffered headaches in my life and for the last 2-3weeks I have had this dull pressure tight band feeling around my head headache if that makes sense that has now moved to a pressure feeling all over my head
Hi all I am going to just come out and say it - I think I have a brain tumor! I have never suffered headaches in my life and for the last 2-3weeks I have had this dull pressure tight band feeling around my head headache if that makes sense that has now moved to a pressure feeling all over my head
Kayanne1980
in
Anxiety Support
6 years ago
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