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Canavan disease
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What were your first symptoms?
Over the last couple of months I've been getting pain in my fingers and toes, it happens several times a day but only lasts a minute or two at a time at the moment. I have autoimmune thyroid disease, and suspected autoimmune cause for my early menopause, and I'm acutely aware that autoimmune diseases
Over the last couple of months I've been getting pain in my fingers and toes, it happens several times a day but only lasts a minute or two at a time at the moment. I have autoimmune thyroid disease, and suspected autoimmune cause for my early menopause, and I'm acutely aware that autoimmune diseases
WitchingHour2point0
in
NRAS
4 months ago
Dealing with an AFib episode without meds.
I was diagnosed with Paroxysmal AFib by an Energency Dept Consultant who ordered certain tests to be done in the future and sent me home with Anticoagulants. I wasn’t given any advice on how to manage an AFib episode or a follow up consultation just a letter to say my test results were OK.A year later
I was diagnosed with Paroxysmal AFib by an Energency Dept Consultant who ordered certain tests to be done in the future and sent me home with Anticoagulants. I wasn’t given any advice on how to manage an AFib episode or a follow up consultation just a letter to say my test results were OK.A year later
Jomaur
in
Atrial Fibrillation Support
2 months ago
Heart rate smart watch
Hi,I have a 2 lead pacemaker for total heart block following AV ablation and 2yrs later since the procedure I'm in heart failure & afib and take ramipril, bisoprolol, dapagliflozin and having a few issues, which has resulted in me having to attend the pacemaker clinic 3x in last 3 weeks. I struggled
Hi,I have a 2 lead pacemaker for total heart block following AV ablation and 2yrs later since the procedure I'm in heart failure & afib and take ramipril, bisoprolol, dapagliflozin and having a few issues, which has resulted in me having to attend the pacemaker clinic 3x in last 3 weeks. I struggled
Nomis21
in
Atrial Fibrillation Support
2 months ago
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Worried about low heart rate now
Ok so I posted up before because was a bit anxious about my heart rate anyway. I have just started and only completed one run on last Tuesday. I felt so wiped out the days following that. I have a doctor's phone consultation on 30th which I originally booked just to get the ok to go ahead with C25K
Ok so I posted up before because was a bit anxious about my heart rate anyway. I have just started and only completed one run on last Tuesday. I felt so wiped out the days following that. I have a doctor's phone consultation on 30th which I originally booked just to get the ok to go ahead with C25K
DanDSC
in
Couch to 5K
2 months ago
changed time of taking Clopidogrel.
Since starting to take Clopidogrel at night, alongside Atorvastatin, I noticed an increase in ectopic/irregular heartbeats. I decided I had endured the anxiety associated with the symptoms long enough so am now taking Clopidogrel in the morning and my Atorvastatin in the evening. The result is…..a much
Since starting to take Clopidogrel at night, alongside Atorvastatin, I noticed an increase in ectopic/irregular heartbeats. I decided I had endured the anxiety associated with the symptoms long enough so am now taking Clopidogrel in the morning and my Atorvastatin in the evening. The result is…..a much
Ladylovesmilktray
in
Anticoagulation Support
2 months ago
IPX203 shows sustained safety, efficacy in RISE-PD extension trial
Using IPX203, an extended-release formulation of carbidopa/levodopa (CD/LD), was associated with a sustained control of symptoms for Parkinson’s disease patients who participated in the open-label extension of the RISE-PD Phase 3 trial. Final results from the nine-month extension study (NCT03877510
Using IPX203, an extended-release formulation of carbidopa/levodopa (CD/LD), was associated with a sustained control of symptoms for Parkinson’s disease patients who participated in the open-label extension of the RISE-PD Phase 3 trial. Final results from the nine-month extension study (NCT03877510
Farooqji
in
Cure Parkinson's
7 months ago
Progression
My mum got diagnosed with PSP just last October,but that took 18 months .She is now in a residential home ,but I fell so guilty I couldn't keep her at home 😞 The PSP has progressed so quickly Her slight is problematic,falling alot,her speech has become very bad over the last month . Thankfully her
My mum got diagnosed with PSP just last October,but that took 18 months .She is now in a residential home ,but I fell so guilty I couldn't keep her at home 😞 The PSP has progressed so quickly Her slight is problematic,falling alot,her speech has become very bad over the last month . Thankfully her
Blitzford72
in
PSP Association
2 months ago
Detecting undiagnosed AF
I'm a stroke lived-experience person since 2016 and, I've had atrial fibrillation / flutter that started years before that. Intially paroxymal, later becoming permanent. I was the subject of a paper (available on the Internet) on pulmonary toxicity (aka cryptogenic organising pnuemonia) secondary to
I'm a stroke lived-experience person since 2016 and, I've had atrial fibrillation / flutter that started years before that. Intially paroxymal, later becoming permanent. I was the subject of a paper (available on the Internet) on pulmonary toxicity (aka cryptogenic organising pnuemonia) secondary to
john-boy-92
in
Atrial Fibrillation Support
2 months ago
drug induced lupus
Hi, My husband has drug induced lupus from inflixmab infusions which he was having for Chrohns disease. He has been in hospital twice from the lupus and they suspected the lupus was causing pericarditis. They also suspect he has psoriatic arthritis. He has been on steroids to control the drug induced
Hi, My husband has drug induced lupus from inflixmab infusions which he was having for Chrohns disease. He has been in hospital twice from the lupus and they suspected the lupus was causing pericarditis. They also suspect he has psoriatic arthritis. He has been on steroids to control the drug induced
Denny39
in
LUPUS UK
4 months ago
Advice
Hi! I have Srogrens, which lead to Rheumatoid Arthritis, which had resulted in ILD. on methotrexate but now in addition been offered Nintedanib. ANY advice please as the only thing I'm worried about is pooping myself😂! many thanks, elaine
Hi! I have Srogrens, which lead to Rheumatoid Arthritis, which had resulted in ILD. on methotrexate but now in addition been offered Nintedanib. ANY advice please as the only thing I'm worried about is pooping myself😂! many thanks, elaine
elainenorman
in
Lung Conditions Community Forum
4 months ago
Skin ulcers
Hi fellow lupus warriors I have had a wound on my leg for at least 6 weeks that is growing and won't scab or heal. I am not on steroids at the moment (just plaquenil) and don't have any other signs of a possible flare. Has anyone ever had something like this? Is it related to Lupus or just a coincidence
Hi fellow lupus warriors I have had a wound on my leg for at least 6 weeks that is growing and won't scab or heal. I am not on steroids at the moment (just plaquenil) and don't have any other signs of a possible flare. Has anyone ever had something like this? Is it related to Lupus or just a coincidence
lupus_paradise
in
LUPUS UK
4 months ago
Ablation or Not?
I'm currently waiting for an ablation and have been for over 6 months. When I first developed AF I was quite badly affected by it. I would: Get out of breath just walking a short distance Keep falling asleep Found climbing stairs and carrying 'heavy' things more difficult than they should Occasionally
I'm currently waiting for an ablation and have been for over 6 months. When I first developed AF I was quite badly affected by it. I would: Get out of breath just walking a short distance Keep falling asleep Found climbing stairs and carrying 'heavy' things more difficult than they should Occasionally
Peakoverload
in
Atrial Fibrillation Support
2 months ago
Parkinson's disease breakthrough
The following article claims that the majority of "Parkinson's Disease" is started by just a simple bacteria called Desulfovibrio, and the rest about 10 percent is caused by individual genes. Parkinson's disease could be prevented in the future after scientists discovered that a certain strain of bacteria
The following article claims that the majority of "Parkinson's Disease" is started by just a simple bacteria called Desulfovibrio, and the rest about 10 percent is caused by individual genes. Parkinson's disease could be prevented in the future after scientists discovered that a certain strain of bacteria
Baron1
in
Cure Parkinson's
7 months ago
MTHFR and Lupus
I noticed that some members have both of these diagnosis as well as Sjogrens. No one ever checked my homocysteine level until after I had Complete Heart Block and was implanted with a Pacemaker/defibulator. I have always felt that if the MTHFR was diagnosed before all the other autoimmune diseases, I
I noticed that some members have both of these diagnosis as well as Sjogrens. No one ever checked my homocysteine level until after I had Complete Heart Block and was implanted with a Pacemaker/defibulator. I have always felt that if the MTHFR was diagnosed before all the other autoimmune diseases, I
DogHospiceMom
in
LUPUS UK
2 months ago
Arrhythmia Checklist
Do you or a family member experience unexplained chest pain, a rapid or irregular pulse, breathlessness, or light-headedness, these are all symptoms that should not be ignored and could be the early warning signs of an underlying heart rhythm disorder/ For further guidance, download the Arrhythmia
Do you or a family member experience unexplained chest pain, a rapid or irregular pulse, breathlessness, or light-headedness, these are all symptoms that should not be ignored and could be the early warning signs of an underlying heart rhythm disorder/ For further guidance, download the Arrhythmia
TracyAdmin
Partner
in
Sudden Cardiac Arrest & Heart Attack
2 months ago
Nebivolol 2.5mg
I started Nebivolol for my AFIB about one month ago for my heart rate! I like the drug but seem to have a lot of gas on my stomach! Has anyone else had this problem?
I started Nebivolol for my AFIB about one month ago for my heart rate! I like the drug but seem to have a lot of gas on my stomach! Has anyone else had this problem?
BaileyC57
in
Atrial Fibrillation Support
2 months ago
new immune therapy phase 1-2 trial: targeting NK cells
The first patient with metastatic castration-resistant prostate cancer (mCRPC) has been dosed in the phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy https://www.targetedonc.com/view/first-patient-dosed-with-inkmune-therapy-in-phase-1-2-trial-for-mcrpc
The first patient with metastatic castration-resistant prostate cancer (mCRPC) has been dosed in the phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy https://www.targetedonc.com/view/first-patient-dosed-with-inkmune-therapy-in-phase-1-2-trial-for-mcrpc
Maxone73
in
Advanced Prostate Cancer
7 months ago
Update On Eclipse Trial-another failure. Has LU-177 worked for anyone?
In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years
In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years
SViking
in
Advanced Prostate Cancer
7 months ago
Lipid results
Since my last post regarding elevated finger prick sample for cholesterol, I am now in receipt of my formal blood test results for lipid profile which are borderline and need to speak to Doctor. I do have a GP follow up next week to discuss these but wondered if anyone on here can interpret them and
Since my last post regarding elevated finger prick sample for cholesterol, I am now in receipt of my formal blood test results for lipid profile which are borderline and need to speak to Doctor. I do have a GP follow up next week to discuss these but wondered if anyone on here can interpret them and
Maynan17
in
Thyroid UK
2 months ago
Diagnoses
Has anyone been diagnosed with an autoimmune condition without having positive blood tests? I've been trying in vain since 2006, got most of lupus symptoms but Ana either 1:180 or negative and other tests negative .
Has anyone been diagnosed with an autoimmune condition without having positive blood tests? I've been trying in vain since 2006, got most of lupus symptoms but Ana either 1:180 or negative and other tests negative .
catblue1865
in
LUPUS UK
4 months ago
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