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Experiences with
Brain arteriovenous malformation (AVM)
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Radiation Necrosis?
Hello Has anyone had any experience of radiation necrosis in a brain met? I am stage 4 ALK positive and on treatment with Ceritinib for the last 3 years and was diagnosed over 5 years ago. I had SRS to 4 brain mets about 13 months ago. They responded really well with 2 disappearing,1 shrinking and one
Hello Has anyone had any experience of radiation necrosis in a brain met? I am stage 4 ALK positive and on treatment with Ceritinib for the last 3 years and was diagnosed over 5 years ago. I had SRS to 4 brain mets about 13 months ago. They responded really well with 2 disappearing,1 shrinking and one
BellaBe
in
The Roy Castle Lung Cancer Foundation
2 years ago
Shingles Vaccine
There has been a lot of advertising on Classic FM that older people with immune deficiency diseases should get the anti shingles vaccine. I asked the question a few years ago and it was stated by Prof Harrison that this was a live vaccine and was therefore dangerous to us with ET/PV especially if we
There has been a lot of advertising on Classic FM that older people with immune deficiency diseases should get the anti shingles vaccine. I asked the question a few years ago and it was stated by Prof Harrison that this was a live vaccine and was therefore dangerous to us with ET/PV especially if we
catkinspolymer
in
MPN Voice
2 years ago
Erythema Migrans
I have CLL/SLL , diagnosed in 2010. Have been taking BTK inhibitors since 2017. First Imbruvica and the last two and a half years Calquence. A small reddish spot appeared on my arm in the middle of June. It started to spread. I did not pay much attention. End of July I showed it to my oncologist who
I have CLL/SLL , diagnosed in 2010. Have been taking BTK inhibitors since 2017. First Imbruvica and the last two and a half years Calquence. A small reddish spot appeared on my arm in the middle of June. It started to spread. I did not pay much attention. End of July I showed it to my oncologist who
zsuzsiB
in
CLL Support
2 years ago
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An urgent warning about rytary...
I am in contact currently with 3 hu people that are seriously messed up on rytary...i think its a kindling effect or what i call stacking. I believe we are not only overdosed on rytary but it also is having some strange psychiatric effects common to us 3. please check the link for full understanding,
I am in contact currently with 3 hu people that are seriously messed up on rytary...i think its a kindling effect or what i call stacking. I believe we are not only overdosed on rytary but it also is having some strange psychiatric effects common to us 3. please check the link for full understanding,
beehive23
in
Cure Parkinson's
2 years ago
good hospital for DBS in Florida.
medical tourism, Hi everyone, can anybody please recommend to me, a hospital or clinic in florida or new Orlean, where i can get a good treatment and care for the dreaded parkinson disease. I want to try out dbs treatment and see how it goes. great thanks..
medical tourism, Hi everyone, can anybody please recommend to me, a hospital or clinic in florida or new Orlean, where i can get a good treatment and care for the dreaded parkinson disease. I want to try out dbs treatment and see how it goes. great thanks..
Masterka
in
Cure Parkinson's
2 years ago
shingles vaccination
I thought I posted but something went wrong! I have recurring shingles, had it since age 25. I have it currently. I read the shingles post and see shingrix is best option - I have pmr and on very low dose steroid at 2per day dropping slowly to one per day. (10 per week). I want a private vaccination
I thought I posted but something went wrong! I have recurring shingles, had it since age 25. I have it currently. I read the shingles post and see shingrix is best option - I have pmr and on very low dose steroid at 2per day dropping slowly to one per day. (10 per week). I want a private vaccination
Pongo13
in
PMRGCAuk
2 years ago
Shingles vaccination
I know catching shingles with PMR is a complete no-no, but does anyone know if we are OK having the vaccination? I imagine if we are, it’s a good idea
I know catching shingles with PMR is a complete no-no, but does anyone know if we are OK having the vaccination? I imagine if we are, it’s a good idea
calibriel
in
PMRGCAuk
2 years ago
What exactly is shingles
I’m wondering what the early symptoms and what shingles is. Has anybody had this problem before? And how does it start. Any advice on reply would help
I’m wondering what the early symptoms and what shingles is. Has anybody had this problem before? And how does it start. Any advice on reply would help
Hidden
in
Pain Concern
2 years ago
Watch Prof Tom Foltynie on the topic of repurposing diabetes drugs for Parkinson's disease - Recording now available
Thank you to Prof Tom Foltynie for his time and expertise last night on the topic of repurposing diabetes drugs, including Exenatide, for Parkinson's disease. It was an excellent presentation and discussion that brings us all up to date with the latest in the trials, including feedback from some of you
Thank you to Prof Tom Foltynie for his time and expertise last night on the topic of repurposing diabetes drugs, including Exenatide, for Parkinson's disease. It was an excellent presentation and discussion that brings us all up to date with the latest in the trials, including feedback from some of you
Michel0220
in
Cure Parkinson's
2 years ago
Update shingles vaccination before start JAK inhibitor
Thanks all…found all the information I need re shingles vaccination. Now aware there’s a non live one, Shingrix, but as I’m 62 it may take a bit of support (or saving up!) to get it.Only another 8 years to wait! Why isn’t this offered as routine for us folks….know it doesn’t provide full immunity..what
Thanks all…found all the information I need re shingles vaccination. Now aware there’s a non live one, Shingrix, but as I’m 62 it may take a bit of support (or saving up!) to get it.Only another 8 years to wait! Why isn’t this offered as routine for us folks….know it doesn’t provide full immunity..what
Taraheart
in
NRAS
2 years ago
It was perfect when zoloft worked for me but time is over
I have a "pure O", but I think, I have undiagnosted subtype of OCD, in which the first awful symptome must be the inerty thinking, which means I am very dumb sometimes. But this happens only because I have uncontrolled thoughts every minute, I can't be away of them. When I was taking Zoloft 25 mg,
I have a "pure O", but I think, I have undiagnosted subtype of OCD, in which the first awful symptome must be the inerty thinking, which means I am very dumb sometimes. But this happens only because I have uncontrolled thoughts every minute, I can't be away of them. When I was taking Zoloft 25 mg,
Amuch
in
My OCD Community
2 years ago
What is Stereotactic Radio Surgery & some information please?
I think I'm going to be offered this at Addenbrooks for Brain Cancer. Questions are:- How many sessions require? Do you stay in hospital? Is it a hard treatment to take/side effects? I'm told they could be doubtful on treatment because walking is poor, why does this matter? Does treatment kill tumour
I think I'm going to be offered this at Addenbrooks for Brain Cancer. Questions are:- How many sessions require? Do you stay in hospital? Is it a hard treatment to take/side effects? I'm told they could be doubtful on treatment because walking is poor, why does this matter? Does treatment kill tumour
Beatless
in
The Roy Castle Lung Cancer Foundation
2 years ago
Advice on Pramipexole Withdrawal?
I was as diagnosed with PD in 2012.. At that time I was put on Pramipexole and Rasagaline and several years later- Sinemet. When I transferred to a movement disorder specialist in 2016, I was on 1mg of Pramipexole- 5 times a day (No this is not a misprint) I did not know any different until I started
I was as diagnosed with PD in 2012.. At that time I was put on Pramipexole and Rasagaline and several years later- Sinemet. When I transferred to a movement disorder specialist in 2016, I was on 1mg of Pramipexole- 5 times a day (No this is not a misprint) I did not know any different until I started
Park4me
in
Restless Legs Syndrome
2 years ago
Cranioplasty anxiety
Getting my cranioplasty next month however, due to the trauma of my last surgery I’m over anxious and to be honest extremely scared. Looking for success stories out there to help me this last part of my recovery
Getting my cranioplasty next month however, due to the trauma of my last surgery I’m over anxious and to be honest extremely scared. Looking for success stories out there to help me this last part of my recovery
Sadie78
in
Headway
2 years ago
Prof Tom Foltynie: “Does the repurposing of diabetes drugs offer hope for Parkinson’s patients?” - Wed 29th June at 7.30 pm London time
I am delighted to announce our next zoom session that will be taking place at 7.30 pm London time on Wednesday, the 29th of June. We will have the pleasure of listening to Professor Tom Foltynie who will talk to us about “Does the repurposing of diabetes drugs offer hope for Parkinson’s patients?”
I am delighted to announce our next zoom session that will be taking place at 7.30 pm London time on Wednesday, the 29th of June. We will have the pleasure of listening to Professor Tom Foltynie who will talk to us about “Does the repurposing of diabetes drugs offer hope for Parkinson’s patients?”
Michel0220
in
Cure Parkinson's
2 years ago
PD DBS
Before and after videos
Before and after videos
Deanne
in
Cure Parkinson's
2 years ago
The battle with Parkinson's and DBS
Hello All, I was diagnosed with Parkinson's almost ten years ago at age of 50, I had been having many health problems 3 years prior, and they attributed all of my issues to a spinal injury that I had many years earlier. I was missed diagnosed, I had Parkinson's. I started out using no Medications, but
Hello All, I was diagnosed with Parkinson's almost ten years ago at age of 50, I had been having many health problems 3 years prior, and they attributed all of my issues to a spinal injury that I had many years earlier. I was missed diagnosed, I had Parkinson's. I started out using no Medications, but
Bondslave
in
Cure Parkinson's
2 years ago
Rituximab and tetanus (etc.)
This is to all my fellow immune suppressed folks about rituximab. I've been unable to find solid information, and my consultants aren't sure, so wondered if anyone here knows. Does rituximab impact our tetanus jabs and similar? I was up to date on all my boosters, but got bit by a tick on Saturday (think
This is to all my fellow immune suppressed folks about rituximab. I've been unable to find solid information, and my consultants aren't sure, so wondered if anyone here knows. Does rituximab impact our tetanus jabs and similar? I was up to date on all my boosters, but got bit by a tick on Saturday (think
Grizzly-bear
in
Vasculitis UK
2 years ago
video: INSIGHT Grand Rounds | Deep Brain Stimulation For Treatment of Parkinson’s Disease | Dali Yin
https://www.youtube.com/watch?v=vxRL0tB2lQU
https://www.youtube.com/watch?v=vxRL0tB2lQU
Hidden
in
Cure Parkinson's
2 years ago
GREAT NEWS! Intra-Nasal FGF-1 Human Trials have started! WATCH video! Tremor reduced!
Zhittya Genesis Medicine May 2022 Update Parkinson’s Disease Medical Research Study Using Intranasal Delivery of FGF-1: First Look at the Data https://youtu.be/Q7n9YuEuIpM Zhittya Intranasal Development Corporation (ZINC), a subsidiary of Zhittya Genesis Medicine, initiated its “Medical Research Study
Zhittya Genesis Medicine May 2022 Update Parkinson’s Disease Medical Research Study Using Intranasal Delivery of FGF-1: First Look at the Data https://youtu.be/Q7n9YuEuIpM Zhittya Intranasal Development Corporation (ZINC), a subsidiary of Zhittya Genesis Medicine, initiated its “Medical Research Study
PDWarrior1900
in
Cure Parkinson's
2 years ago
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