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went off Xgeva for a year, have to go back on it. Ideas or tips helpful
Hi, the short version is I’ve been dealing w stage 4 MBC since 2019/ 2020 with mets to the bones since 2020, including a thoracic spinal fracture which led to a spinal fusion. I was put on Xgeva for a couple of years and later read on Xgeva’s website that being on it long term is likely to increase
Hi, the short version is I’ve been dealing w stage 4 MBC since 2019/ 2020 with mets to the bones since 2020, including a thoracic spinal fracture which led to a spinal fusion. I was put on Xgeva for a couple of years and later read on Xgeva’s website that being on it long term is likely to increase
Verbena1
in
Bone Health and Osteoporosis UK
6 months ago
Raynauds and Hypermobility
Hello, I've been diagnosed with primary Raynauds which is getting worse. I've had blood tests to rule out other conditions, but they've all been negative. Should I be pushing for a nailfold capillorthingy (technical term...)? I've also got colitis, irritable bladder, some joint hypermobility so I'm
Hello, I've been diagnosed with primary Raynauds which is getting worse. I've had blood tests to rule out other conditions, but they've all been negative. Should I be pushing for a nailfold capillorthingy (technical term...)? I've also got colitis, irritable bladder, some joint hypermobility so I'm
Boudica78
in
Scleroderma & Raynaud's UK (SRUK)
2 months ago
newly diagnosed
Hi all, I was diagnosed around two days ago with fibromyalgia and hypermobility syndrome (eds), although I’ve been struggling for a while now, I’m struggling to take in the diagnosis, I was just wondering if anyone had any advice to give or suggestions on what to do next. Thanks in advance :) x
Hi all, I was diagnosed around two days ago with fibromyalgia and hypermobility syndrome (eds), although I’ve been struggling for a while now, I’m struggling to take in the diagnosis, I was just wondering if anyone had any advice to give or suggestions on what to do next. Thanks in advance :) x
Pink_piglet
in
Fibromyalgia Action UK
3 months ago
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tortuous world of pain
I have no words, I have been to see 2 pain specialists, 2 neurologists for ongoing nerve damage pain, back pain and restless leg pain and symptoms..e.g continual torturing tugging, electric prod like pain and jerking of whole limb. I discovered when I had my last spinal operation that the Buprenorphine
I have no words, I have been to see 2 pain specialists, 2 neurologists for ongoing nerve damage pain, back pain and restless leg pain and symptoms..e.g continual torturing tugging, electric prod like pain and jerking of whole limb. I discovered when I had my last spinal operation that the Buprenorphine
Hidden
in
Neuropathy Support
7 months ago
Torturous world of RLS
I have no words, I have been to see 2 pain specialists, 2 neurologists for ongoing nerve damage pain, back pain and restless leg pain and symptoms..e.g continual torturing tugging, electric prod like pain and jerking of whole limb. I discovered when I had my last spinal operation that the Buprenorphine
I have no words, I have been to see 2 pain specialists, 2 neurologists for ongoing nerve damage pain, back pain and restless leg pain and symptoms..e.g continual torturing tugging, electric prod like pain and jerking of whole limb. I discovered when I had my last spinal operation that the Buprenorphine
Hidden
in
Restless Legs Syndrome
7 months ago
9 years PMR and counting!
Hello all, firstly, I cannot express my gratitude for this site well enough. It has educated me, waylaid my apprehensions and relieved my moments of aloneness - thank you all. My background is ICU nursing and then psychologist in private practice specialising in aged competency issues, head injuries
Hello all, firstly, I cannot express my gratitude for this site well enough. It has educated me, waylaid my apprehensions and relieved my moments of aloneness - thank you all. My background is ICU nursing and then psychologist in private practice specialising in aged competency issues, head injuries
AussieKid
in
PMRGCAuk
8 months ago
skin issue
I have had CLL for about four years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to Spondylolisthesis. I feel like I’m recovering as well as I can expect from the surgery. My hemoglobin dropped to 10 post surgery so I have been very tired but
I have had CLL for about four years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to Spondylolisthesis. I feel like I’m recovering as well as I can expect from the surgery. My hemoglobin dropped to 10 post surgery so I have been very tired but
BlueJk
in
CLL Support
8 months ago
Grover’s disease
I have had CLL for about five years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to Spondylolisthesis. I feel like I’m recovering as well as I can expect from the surgery. My hemoglobin dropped to 10 post surgery so I have been very tired but
I have had CLL for about five years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to Spondylolisthesis. I feel like I’m recovering as well as I can expect from the surgery. My hemoglobin dropped to 10 post surgery so I have been very tired but
BlueJk
in
CLL America Support
9 months ago
Suggestions on Supplements
Hello Friends, I need your opinion and advice on the supplements I am taking, and wish to add soon. Timings are +/- 45 mins. Currently taking: 8.30am R-Alpha Lipoic Acid 9.30am Omega 3 Super DHA, Curcumin Meriva, D3 2000iu 11am Vitamin C Complex, Ginkgo Biloba 12pm MCT oil 3.30pm GlyNAC 8pm Omega
Hello Friends, I need your opinion and advice on the supplements I am taking, and wish to add soon. Timings are +/- 45 mins. Currently taking: 8.30am R-Alpha Lipoic Acid 9.30am Omega 3 Super DHA, Curcumin Meriva, D3 2000iu 11am Vitamin C Complex, Ginkgo Biloba 12pm MCT oil 3.30pm GlyNAC 8pm Omega
JayPwP
in
Cure Parkinson's
22 days ago
Improvement of Blood Plasmalogens and Clinical Symptoms in Parkinson's Disease by Oral Administration of Ether Phospholipids:
You got plasmalogen? Any one likes scallops? It is a lengthy article, but our HU scientists will give us their opinion. I have to find the supplement now! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7049862/
You got plasmalogen? Any one likes scallops? It is a lengthy article, but our HU scientists will give us their opinion. I have to find the supplement now! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7049862/
Despe
in
Cure Parkinson's
26 days ago
PIP Application form (Typing replies)
A little about me.I have been diagnosed with :- Lupus Rheumatoid Arthritis Fibromyalgia Underactive thyroid Hyperparathyrodism Carpal tunnel syndrome Osteoarthritis Depression Lower back spinal fusion Constant huge fatigue and brain fog I am planning on applying for PIP for the first time and
A little about me.I have been diagnosed with :- Lupus Rheumatoid Arthritis Fibromyalgia Underactive thyroid Hyperparathyrodism Carpal tunnel syndrome Osteoarthritis Depression Lower back spinal fusion Constant huge fatigue and brain fog I am planning on applying for PIP for the first time and
SLEepyhead123
in
NRAS
9 months ago
Ginkgo Biloba And Drug Induced Parkinsonism
Dr. Mischley has Ginkgo Biloba on her list of PD supplements, but we have not talked much about Ginkgo Biloba (GB) on this forum in relation to PD. I was just looking at the following study which used GB in drug induced parkinsonism (DIP) at a dose of
240 mg/day of GB in three divided doses of 80
Dr. Mischley has Ginkgo Biloba on her list of PD supplements, but we have not talked much about Ginkgo Biloba (GB) on this forum in relation to PD. I was just looking at the following study which used GB in drug induced parkinsonism (DIP) at a dose of
240 mg/day of GB in three divided doses of 80
chartist
in
Cure Parkinson's
1 month ago
does anyone have experience of Benzatropine?
My doctor prescribed Benzatropine for dystonia, he didn’t have time to explain at my visiting. Also I know what he prescribed until I see it at CVS pharmacy. I googled it, seems I should stop taking other med include Amantadine and Rasagiline . Does anyone have knowledge and experience of Benzatropine
My doctor prescribed Benzatropine for dystonia, he didn’t have time to explain at my visiting. Also I know what he prescribed until I see it at CVS pharmacy. I googled it, seems I should stop taking other med include Amantadine and Rasagiline . Does anyone have knowledge and experience of Benzatropine
Grandsonlover
in
Cure Parkinson's
1 month ago
overdose
I was diagnosed Feb 1 2024. Is it possible to overdose on Co-Beneldopa 200 MG. I take three doses a day [3 x 200 mg]. I try to take them at 8-hour intervals but often screw up, as my memory is so bad. Any side effects of Co-Beneldopa?
I was diagnosed Feb 1 2024. Is it possible to overdose on Co-Beneldopa 200 MG. I take three doses a day [3 x 200 mg]. I try to take them at 8-hour intervals but often screw up, as my memory is so bad. Any side effects of Co-Beneldopa?
disilusioned
in
PSP Association
2 months ago
Neuromodulation for PD “Glove ++” : Trials | Observations | Tips | # 2
Some notes on the 'gloves ' aspects and the challenges I've encountered from the ' pool' of Trial Participants. No doubt that in terms of ease of use , acceptance , ' benefits ' , detectable changes / differences - a PWP is first , MSA++ 2nd but PWP & LB ( even min severity ) is very challenging
Some notes on the 'gloves ' aspects and the challenges I've encountered from the ' pool' of Trial Participants. No doubt that in terms of ease of use , acceptance , ' benefits ' , detectable changes / differences - a PWP is first , MSA++ 2nd but PWP & LB ( even min severity ) is very challenging
NuroMod
in
Cure Parkinson's
2 months ago
Anticholinergics impair memory (Benadryl, Tylenol PM, Advil PM, Dimetapp, Dramamine, Unisom)
Improve Memory by AVOIDING These Drugs https://youtu.be/16n80OQCVSM?si=qazHndznZJu-1Ycb Memory Loss in Aging? What Doctors Should Check https://youtu.be/MpohFGvHZHI?si=-7DfEmfS-GLEwQV6
Improve Memory by AVOIDING These Drugs https://youtu.be/16n80OQCVSM?si=qazHndznZJu-1Ycb Memory Loss in Aging? What Doctors Should Check https://youtu.be/MpohFGvHZHI?si=-7DfEmfS-GLEwQV6
MBAnderson
in
Cure Parkinson's
3 months ago
Lori, NURSE
I worked in a homeless program where I worked 70-70 hours a week. I was in a BSN program full time. I caught meningitis from the homeless program. I went from a thriving healthy nurse who got the scholarship for school by being an exemplary Nurse. At first I thought it was a bad flu with light sensitivity
I worked in a homeless program where I worked 70-70 hours a week. I was in a BSN program full time. I caught meningitis from the homeless program. I went from a thriving healthy nurse who got the scholarship for school by being an exemplary Nurse. At first I thought it was a bad flu with light sensitivity
FeelingDesperate
in
Meningitis Now
10 months ago
Donepezil as an aid for PSP
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Richard33
in
PSP Association
6 months ago
Altruist
My story won't apply to everyone, of course, but you may find a nugget worth considering. I've had mild RLS intermittently for forty years until it recently worsened. I'd always managed it with weighted heat, L-Tryptophan, magnesium glycinate, L-Theanine, and if necessary, a little pacing. At age 36,
My story won't apply to everyone, of course, but you may find a nugget worth considering. I've had mild RLS intermittently for forty years until it recently worsened. I'd always managed it with weighted heat, L-Tryptophan, magnesium glycinate, L-Theanine, and if necessary, a little pacing. At age 36,
Altruist
in
Restless Legs Syndrome
11 months ago
Straw therapy for low speech volume
Hubby has low volume speech. He is currently doing work with the Parkinson’s Voice Project (PVP) with some success — IF he keeps up with it. We recently saw exercises for help projecting with volume using a straw (you blow into a glass of water), supposedly this helps with increasing the muscle tone
Hubby has low volume speech. He is currently doing work with the Parkinson’s Voice Project (PVP) with some success — IF he keeps up with it. We recently saw exercises for help projecting with volume using a straw (you blow into a glass of water), supposedly this helps with increasing the muscle tone
1rocketman
in
Cure Parkinson's
7 months ago
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