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Brain arteriovenous malformation (AVM)
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DBS levadopa challenge. Glad its over, but it does raise a question.
Just left hospital after my levadopa challenge assessment for DBS.Wow, i wasn't prepared for how I'd be after having no meds since 7pm last night. I can honestly say I appreciate my meds so much more now. My normal day starts at 4:30am when i take my Stalevo 125mg. I'm very slow, shakey, and have some
Just left hospital after my levadopa challenge assessment for DBS.Wow, i wasn't prepared for how I'd be after having no meds since 7pm last night. I can honestly say I appreciate my meds so much more now. My normal day starts at 4:30am when i take my Stalevo 125mg. I'm very slow, shakey, and have some
gingerj
in
Cure Parkinson's
1 year ago
Which DBS system?
So it's not going to be too long now. August/September? At my last appointment they asked me which DBS system I would choose. This is at Bristol in the UK. Sayeth I , 'errrrrrrrrrrrr.........................dunno...................Id better go and ask my mates'. So my ever helpful community! Over
So it's not going to be too long now. August/September? At my last appointment they asked me which DBS system I would choose. This is at Bristol in the UK. Sayeth I , 'errrrrrrrrrrrr.........................dunno...................Id better go and ask my mates'. So my ever helpful community! Over
jeeves19
in
Cure Parkinson's
1 year ago
Shingles vaccine
Just seen the BBC news health website. Shingles vaccines being offered to over 65’s ( was 70) and, even better, to vulnerable immune suppressed people over 55 from September 2023.
Just seen the BBC news health website. Shingles vaccines being offered to over 65’s ( was 70) and, even better, to vulnerable immune suppressed people over 55 from September 2023.
Amnesiac3637
in
NRAS
1 year ago
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Working full-time with a DBS
DBS Deep Brain Stimulation. 1) Are there any warriors who have received DBS and are still employed full-time? 2) Are there any IT/computers warriors who have received DBS and are still working? Just wondering if that's humanly possible. Thank you for your time.
DBS Deep Brain Stimulation. 1) Are there any warriors who have received DBS and are still employed full-time? 2) Are there any IT/computers warriors who have received DBS and are still working? Just wondering if that's humanly possible. Thank you for your time.
surdug1
in
Cure Parkinson's
1 year ago
Jaw and Shoulder Pain
Did anyone have jaw and/or shoulder pain that was eventually relieved once they found their sweetspot? I am 24 days on 100mcg T4 and 5mcg T3. I have the jaw and shoulder pain, plus still very tired. I think the brain fog is somewhat better. It is hard to sort out brain fog and fatigue at times. I can
Did anyone have jaw and/or shoulder pain that was eventually relieved once they found their sweetspot? I am 24 days on 100mcg T4 and 5mcg T3. I have the jaw and shoulder pain, plus still very tired. I think the brain fog is somewhat better. It is hard to sort out brain fog and fatigue at times. I can
HeartWoman
in
Thyroid UK
1 year ago
OFF time but so much more!
I learned so much about our disease through this video. It was about OFF time but through that lens I learned out about the medications prescribed to us. There is a clear description of the different DBS devices available. This guy made my neurologist look like an amateur. https://youtu.be/TunPzh2Lw3U
I learned so much about our disease through this video. It was about OFF time but through that lens I learned out about the medications prescribed to us. There is a clear description of the different DBS devices available. This guy made my neurologist look like an amateur. https://youtu.be/TunPzh2Lw3U
PalmSprings
in
Cure Parkinson's
1 year ago
*MCAS
We are currently in the middle of an important fundraising campaign to kickstart the production of a documentary. We are contacting businesses and individuals who share our passion for helping people with MCAS. Your donation, no matter how big or small, can make a meaningful impact and will be put to
We are currently in the middle of an important fundraising campaign to kickstart the production of a documentary. We are contacting businesses and individuals who share our passion for helping people with MCAS. Your donation, no matter how big or small, can make a meaningful impact and will be put to
Shewulf
Administrator
in
LDN Research Trust
1 year ago
Need faster research on Neuro-modulation
I attended 2 various zoom meets of Vibratory Neuro-modulation . In UK they have a CUE1 available at less than 500 dollars that is showing some amazing strides for some people. Then I watched a zoom with Dr Peter Tass who is a researcher involved with the amazing Vibratory Gloves. My wife was a participant
I attended 2 various zoom meets of Vibratory Neuro-modulation . In UK they have a CUE1 available at less than 500 dollars that is showing some amazing strides for some people. Then I watched a zoom with Dr Peter Tass who is a researcher involved with the amazing Vibratory Gloves. My wife was a participant
Furch
in
Cure Parkinson's
1 year ago
Departing the Soul
Dear friends, I have been grappling with PD now for over ten years and it is getting harder and harder to go on and I have been contemplating MAID program for a while now, but my wife, who is my only support is not letting me go through with it. She loves me dearly. Moreover, she has no one except
Dear friends, I have been grappling with PD now for over ten years and it is getting harder and harder to go on and I have been contemplating MAID program for a while now, but my wife, who is my only support is not letting me go through with it. She loves me dearly. Moreover, she has no one except
gurdeep11
in
Cure Parkinson's
1 year ago
Not sure what to do!
Had shingles about a month ago, it’s cleared up now, started after taking abatacept first injection, had anti virals, not sure now if I should go back on it, also take MTX which wasn’t working good after being on it for 16 years, funny thing is my crp came back at 3 after having shingles and anti
Had shingles about a month ago, it’s cleared up now, started after taking abatacept first injection, had anti virals, not sure now if I should go back on it, also take MTX which wasn’t working good after being on it for 16 years, funny thing is my crp came back at 3 after having shingles and anti
Kate2628
in
NRAS
1 year ago
DBS stimulator pros and cons
Can you turn DBS stimulator Off and control it with medication as before surgery?
Can you turn DBS stimulator Off and control it with medication as before surgery?
surdug1
in
Cure Parkinson's
1 year ago
Shingles
Hi all, My friend has Shingles. With PMR is it advisable to stay away until after breakout. Reading conflicting advice. Much appreciated yet again!! Thank you.
Hi all, My friend has Shingles. With PMR is it advisable to stay away until after breakout. Reading conflicting advice. Much appreciated yet again!! Thank you.
Fredddie
in
PMRGCAuk
1 year ago
PIP ASSESSMENT FORMS
I had a brain tumour removed some years ago. I am about to have another operation to remove a tumour from behind my eye, which is rapidly taking my sight. I have been in receipt of PIP for a number of years, my forms were obviously looked at by reasonably intelligent people. My current PIP claim was
I had a brain tumour removed some years ago. I am about to have another operation to remove a tumour from behind my eye, which is rapidly taking my sight. I have been in receipt of PIP for a number of years, my forms were obviously looked at by reasonably intelligent people. My current PIP claim was
Bellemare
in
Headway
1 year ago
MDD Suffers: Avolition
I wish I knew this when I was suffering from MDD so I wanted to share. There is a clinical reason why you “can’t” do things. I knew I was supposed to excercise or walk my dog I just couldn’t do it. Which made me feel worse about myself when I chose to islolate instead. Before my DBS surgery I was talking
I wish I knew this when I was suffering from MDD so I wanted to share. There is a clinical reason why you “can’t” do things. I knew I was supposed to excercise or walk my dog I just couldn’t do it. Which made me feel worse about myself when I chose to islolate instead. Before my DBS surgery I was talking
jnelson66
in
Major Depressive Disorder (MDD) Support
1 year ago
DBS info
Where is he going? My husband had it 3 yrs ago and is thrilled even tho he had a slight brain bleed affecting his speech a tad— he says he would do it again! Rigidity/cramping are what drove him to do it— he was on 17 carba/leva a day and down to about 6! Diagnosed at 64 yrs old, 7 yrs ago.. you should
Where is he going? My husband had it 3 yrs ago and is thrilled even tho he had a slight brain bleed affecting his speech a tad— he says he would do it again! Rigidity/cramping are what drove him to do it— he was on 17 carba/leva a day and down to about 6! Diagnosed at 64 yrs old, 7 yrs ago.. you should
Studio60
in
Cure Parkinson's
1 year ago
Rytary and Deep Brain Stimulation
my husband has been taking Rytary for a year. We noticed his veins get large and tingle which he says at time hurts. It gives him a terrible headache more then the the plain C/L. The Dr wants him to consider DBS now . He said it has benefits but won’t last forever then back to square one. He doesn’
my husband has been taking Rytary for a year. We noticed his veins get large and tingle which he says at time hurts. It gives him a terrible headache more then the the plain C/L. The Dr wants him to consider DBS now . He said it has benefits but won’t last forever then back to square one. He doesn’
Blueyedgirlky
in
Cure Parkinson's
1 year ago
All MDD Patients There Is HOPE: Watch this
I have been through it all with MDD. I can relate to every post in here. I was treatment resistant for a decade. I got Deep brain stimulation surgery last year and am in remission from depression. I would guess it’s FDA approved within a couple of years. The options now if nothing works is to suffer
I have been through it all with MDD. I can relate to every post in here. I was treatment resistant for a decade. I got Deep brain stimulation surgery last year and am in remission from depression. I would guess it’s FDA approved within a couple of years. The options now if nothing works is to suffer
jnelson66
in
Major Depressive Disorder (MDD) Support
1 year ago
Viral Meningitis
Dear all,I am from Germany but I did not find any useful forums where I can read about similar syptoms and post meningitis peoblems! I had meningitis and was brought in hospital on 16.3 with a painful headache and fever.luckily the next day a doctor said he wants to do a „puncture“ to be sure it is not
Dear all,I am from Germany but I did not find any useful forums where I can read about similar syptoms and post meningitis peoblems! I had meningitis and was brought in hospital on 16.3 with a painful headache and fever.luckily the next day a doctor said he wants to do a „puncture“ to be sure it is not
Walkingintheforest
in
Meningitis Now
1 year ago
FAA Medical Exam and PPL
One of things things I would like to do after I retire is earn a Private Pilot's License (PPL). Is there anybody who has had problems passing the Medical Exam if you have had PD or DBS surgery?
One of things things I would like to do after I retire is earn a Private Pilot's License (PPL). Is there anybody who has had problems passing the Medical Exam if you have had PD or DBS surgery?
DeanGreen
in
Cure Parkinson's
1 year ago
PMR and shingles
Just wondering if you should see GP Wright away for antiviral meds if you have shingles and PMR,thanks so much xx
Just wondering if you should see GP Wright away for antiviral meds if you have shingles and PMR,thanks so much xx
Harrywogan
in
PMRGCAuk
1 year ago
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