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Giant axonal neuropathy
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Coping with heat
I need your advice my friends. We live in the north of England and rarely get a heatwave but this summer we had 2 and my HWP, who is in his 29th year of diagnosis, really suffered. I looked on HU and saw this can be a problen in PD. I told him what I had read and dealt with it with fans and cold packs
I need your advice my friends. We live in the north of England and rarely get a heatwave but this summer we had 2 and my HWP, who is in his 29th year of diagnosis, really suffered. I looked on HU and saw this can be a problen in PD. I told him what I had read and dealt with it with fans and cold packs
JeanieBeanie
in
Cure Parkinson's
2 years ago
Cool, newly discovered AI search engine for supplements - SUPP.ai
While updating my files on curcumin formulations (Thanks to MB's recent post on Thracurmin for cognitive function), this website popped up in my search results. It was developed by the Allen Institute for AI (founded by Microsoft co-founder, Paul Allen) and is designed to search for supplement interactions
While updating my files on curcumin formulations (Thanks to MB's recent post on Thracurmin for cognitive function), this website popped up in my search results. It was developed by the Allen Institute for AI (founded by Microsoft co-founder, Paul Allen) and is designed to search for supplement interactions
cujoe
in
Fight Prostate Cancer
2 years ago
Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
in
PMRGCAuk
2 years ago
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IVF gonal F dosage
hi all Starting IVF again & my doc has put me on what seems to be a low dose of gonal : 225 Last time I was on 300 and got 11 eggs. she can see a lot of follicles which is her logic behind the lower dose but for me I just want as many eggs as possible anyone else on 225? Thanks
hi all Starting IVF again & my doc has put me on what seems to be a low dose of gonal : 225 Last time I was on 300 and got 11 eggs. she can see a lot of follicles which is her logic behind the lower dose but for me I just want as many eggs as possible anyone else on 225? Thanks
Kit12345
in
Fertility Network UK
2 years ago
Health update
Hello everyone, not sure if this helps... I went through genetic testing and they found my KMT2B gene activated. This is odd due to my age and how aggresive it is. My Dr has never seen this happen before. In actuality, there is nothing in written human history (as far as I know) that shows late stage
Hello everyone, not sure if this helps... I went through genetic testing and they found my KMT2B gene activated. This is odd due to my age and how aggresive it is. My Dr has never seen this happen before. In actuality, there is nothing in written human history (as far as I know) that shows late stage
Hidden
in
Functional Neurological Disorder - FND Hope
2 years ago
Help with diagnosis please.
I'm guessing fibromyalgia is going to be my company for the coming years unfortunately but is for thr doctors to decide that of course. How yours was diagnosed? Was your GP helpful? Did they send you for what tests? Did they make a referral to a rheumatologist? Any advice is more than welcome. I've
I'm guessing fibromyalgia is going to be my company for the coming years unfortunately but is for thr doctors to decide that of course. How yours was diagnosed? Was your GP helpful? Did they send you for what tests? Did they make a referral to a rheumatologist? Any advice is more than welcome. I've
ANMRED
in
Fibromyalgia Action UK
2 years ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
2 years ago
Tingling and tinnitus
hi , Just wondered if anyone suffers with pins and needles / tingling - in arms / hands ? Since the weather has got cooler my hands are e really suffering and I’m not sure if this is part of my raynauds or just fm in general ? also does anyone have tinnitus my us fo bad right now snd it’s always
hi , Just wondered if anyone suffers with pins and needles / tingling - in arms / hands ? Since the weather has got cooler my hands are e really suffering and I’m not sure if this is part of my raynauds or just fm in general ? also does anyone have tinnitus my us fo bad right now snd it’s always
PBMB
in
Fibromyalgia Action UK
2 years ago
Appointment to try again at 8:30
So I'm siting here thinking if I want to do this for another round then take a break the gonal f and trigger and timed intercourse if I do would it be rude to ask my nurse for progesterone? My body feels like it's getting out under pressure with TTC wish it could be easier:/ xxxxxx
So I'm siting here thinking if I want to do this for another round then take a break the gonal f and trigger and timed intercourse if I do would it be rude to ask my nurse for progesterone? My body feels like it's getting out under pressure with TTC wish it could be easier:/ xxxxxx
Dashound1
in
Fertility Network UK
2 years ago
Why we add an AART drug to ADT?
In response to a post asking if adding enzalutamide to ADT is beneficial: Xtandi would increase T levels if not simultaneously using an LHRH ADT. It blocks AR in hypothalamus leading to perception of deficit and increased LH and testicular testosterone. So enzalutamide or apalutamide used without ADT
In response to a post asking if adding enzalutamide to ADT is beneficial: Xtandi would increase T levels if not simultaneously using an LHRH ADT. It blocks AR in hypothalamus leading to perception of deficit and increased LH and testicular testosterone. So enzalutamide or apalutamide used without ADT
MateoBeach
in
Fight Prostate Cancer
2 years ago
Calquence and mouth issues?
I’m wondering if anyone taking Calquence has experienced white patches in their mouth? My dentist noticed I have one on my tongue side of gums. It doesn’t hurt and can’t be scraped off (fits the description of leukoplakia when I Google). My dentist thought it looked like trauma and said to call if it
I’m wondering if anyone taking Calquence has experienced white patches in their mouth? My dentist noticed I have one on my tongue side of gums. It doesn’t hurt and can’t be scraped off (fits the description of leukoplakia when I Google). My dentist thought it looked like trauma and said to call if it
CoCoLuna11
in
CLL Support
2 years ago
Is Xtandi necessary or even helping me?
This may be a stupid question but it's been on my mind for a while. I started on Prostap (Lupron) last July and my testosterone dropped to less than 1.0 by October while on just that. My PSA was also below 1.0 by then. My MO started me on Xtandi towards the end of October and my T and PSA appear to
This may be a stupid question but it's been on my mind for a while. I started on Prostap (Lupron) last July and my testosterone dropped to less than 1.0 by October while on just that. My PSA was also below 1.0 by then. My MO started me on Xtandi towards the end of October and my T and PSA appear to
Benkaymel
in
Fight Prostate Cancer
2 years ago
Squalene Monooxygenase
New Australian study below [1]. When tumors outgrow their blood supply, they experience hypoxia (insufficient oxygen). The normal defence for any cell is the generation of hypoxia-inducible factors [HIFs]. HIFs have cell survival functions. In PCa, HIF-1alpha is the most studied. It triggers the
New Australian study below [1]. When tumors outgrow their blood supply, they experience hypoxia (insufficient oxygen). The normal defence for any cell is the generation of hypoxia-inducible factors [HIFs]. HIFs have cell survival functions. In PCa, HIF-1alpha is the most studied. It triggers the
pjoshea13
in
Fight Prostate Cancer
2 years ago
Night Pain , Left -Flank
Hello All ,I have been on Eligard , Zytiga , pred since Feb. 2022 . I have this pain on left flank about 8 o'clock right below the rib cage for about 8 months . The pain is at night but hardly during the day .I had a CT scan , x-ray , MRi , and nothing shows . I e-mailed my MO at V.A. yesterday and she
Hello All ,I have been on Eligard , Zytiga , pred since Feb. 2022 . I have this pain on left flank about 8 o'clock right below the rib cage for about 8 months . The pain is at night but hardly during the day .I had a CT scan , x-ray , MRi , and nothing shows . I e-mailed my MO at V.A. yesterday and she
reconjj
in
Fight Prostate Cancer
2 years ago
Big, big trouble Houston
I’m 60 now but a guy so I’m still prone to daft things like buying Microsoft Flight Simulator. I flew a 747 the other day and blimey did it let me know when I tried a questionable manoeuvre. Red lights, Commercial Airliner Crash Warning sirens etc. Well it’s sort of a metaphor for me currently. Some
I’m 60 now but a guy so I’m still prone to daft things like buying Microsoft Flight Simulator. I flew a 747 the other day and blimey did it let me know when I tried a questionable manoeuvre. Red lights, Commercial Airliner Crash Warning sirens etc. Well it’s sort of a metaphor for me currently. Some
jeeves19
in
Cure Parkinson's
2 years ago
raynauds pain 🥶
Hi all , This condition is slowly making everyday life quite difficult 😞 I have tried all the handwarmers in the world and some medication and nifedipine- but can’t cope with the side effects . As soon as I get a little cold my hands ‘go’ and the only thing that helps is running under the warm
Hi all , This condition is slowly making everyday life quite difficult 😞 I have tried all the handwarmers in the world and some medication and nifedipine- but can’t cope with the side effects . As soon as I get a little cold my hands ‘go’ and the only thing that helps is running under the warm
PBMB
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
NAD injections? What if anything can this so for PA?
Someone sent me info on NAD injections and how it can restore nerves and brain fog and all sorts of symptoms we experience with b12d, but doesn't claim to help PA or b12d. Does anyone know more about this? Online info is confusing too me. We make NAD. But it declines as we age. So injecting it is supposed
Someone sent me info on NAD injections and how it can restore nerves and brain fog and all sorts of symptoms we experience with b12d, but doesn't claim to help PA or b12d. Does anyone know more about this? Online info is confusing too me. We make NAD. But it declines as we age. So injecting it is supposed
EllaNore
in
Pernicious Anaemia Society
2 years ago
Here we go again!
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
broomfield28
in
PMRGCAuk
2 years ago
Have you found a way to cure/improve your peripheral neuropathy?
Hello ladies, I previously posted a message asking about foot massagers or foot spas - best ones to use? I see that some people have also mentioned that acupuncture helped to relieve the pain and others have said that acupuncture did not work for them. Others have said Vitamin B/B12. I do use cream
Hello ladies, I previously posted a message asking about foot massagers or foot spas - best ones to use? I see that some people have also mentioned that acupuncture helped to relieve the pain and others have said that acupuncture did not work for them. Others have said Vitamin B/B12. I do use cream
Meridian14
in
My Ovacome
2 years ago
Kwells / Hyoscine Hydrobromide contraindication
Does anyone happen to know why those with thyroid problems or heart conditions and those over 60, (I have all three) should speak to their doctor before taking these for motion sickness. A pharmacist who was aware of my medical conditions suggested Kwells for me. Only just read the pil in full. I haven
Does anyone happen to know why those with thyroid problems or heart conditions and those over 60, (I have all three) should speak to their doctor before taking these for motion sickness. A pharmacist who was aware of my medical conditions suggested Kwells for me. Only just read the pil in full. I haven
Aurealis
in
Thyroid UK
2 years ago
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