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Sialic acid storage disorders
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Abra cadabra
I hope this finds everyone well. It's kind of a rainy day here in Georgia. Let me come to my point to see if there are any of you who might be going through the same thing as me. Every once in awhile I get what I've been calling over the years "spells". I suddenly become unbelievably sleepy. I can
I hope this finds everyone well. It's kind of a rainy day here in Georgia. Let me come to my point to see if there are any of you who might be going through the same thing as me. Every once in awhile I get what I've been calling over the years "spells". I suddenly become unbelievably sleepy. I can
Atlproctor
in
My MSAA Community
2 months ago
Experiances with Kaiser SF?
Hi All, I completed my radiation therapy 15 months ago at Kaiser SF with Dr. Mohan. Without Flomax, I have terrible pain when I urinate - urinary strictures I believe. My libido is shot and so are my erections...None of my doctors have addressed these issues except to say something akin to ****happens
Hi All, I completed my radiation therapy 15 months ago at Kaiser SF with Dr. Mohan. Without Flomax, I have terrible pain when I urinate - urinary strictures I believe. My libido is shot and so are my erections...None of my doctors have addressed these issues except to say something akin to ****happens
trregan
in
Prostate Cancer Network
9 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
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Hysteroscopy bleeding
Hi everyone!I had hysteroscopy on 14th of December to remove polyp. It was a but painful (I went without sedation) but bearable and quick. Had no bleeding afterwards. On 19th of December I had my first day of periods, as it was due. And on the second day I had so much blood and so many clots that I went
Hi everyone!I had hysteroscopy on 14th of December to remove polyp. It was a but painful (I went without sedation) but bearable and quick. Had no bleeding afterwards. On 19th of December I had my first day of periods, as it was due. And on the second day I had so much blood and so many clots that I went
Shadaelle
in
Endometriosis UK
7 months ago
medication timing???
I am now almost 4 weeks free of Pramipexole š I feel like I am over the worst ( back from hell) but Iām now religiously waking at 11pm then again at 12pm (and sometimes at 1am) with RLS. I have a 10 minute walk around the house and this does ease my pain. I am slowly increasing my Gabapentin dose and
I am now almost 4 weeks free of Pramipexole š I feel like I am over the worst ( back from hell) but Iām now religiously waking at 11pm then again at 12pm (and sometimes at 1am) with RLS. I have a 10 minute walk around the house and this does ease my pain. I am slowly increasing my Gabapentin dose and
Cookiebum24
in
Restless Legs Syndrome
2 months ago
Omeprazole query
Recently diagnosed and on prednisolone; also prescribed Alendronic acid (weekly dose) and Omeprazole. I thought my GP said that as I have no history of gastric problems to only take the Omeprazole in the evening before I take the alendronic acid the next day. But she has prescribed enough for once daily
Recently diagnosed and on prednisolone; also prescribed Alendronic acid (weekly dose) and Omeprazole. I thought my GP said that as I have no history of gastric problems to only take the Omeprazole in the evening before I take the alendronic acid the next day. But she has prescribed enough for once daily
Wheelygood99
in
PMRGCAuk
7 months ago
Extremely tired of chemical castration
I'm interested in chatting with those who have had an orchiectomy, guess thats how you spell it. I'm tired of all the side affects of cancer drugs and all the problems they cause to my body so I'm concidering having an orchiectomy. Yes I know all about what happens when you get this but as far as I'm
I'm interested in chatting with those who have had an orchiectomy, guess thats how you spell it. I'm tired of all the side affects of cancer drugs and all the problems they cause to my body so I'm concidering having an orchiectomy. Yes I know all about what happens when you get this but as far as I'm
woppaginny
in
Advanced Prostate Cancer
2 months ago
Zoledronic acid plus teriparatide
Hi everyone, newbie here. My wife is about to go onto treatment for fairly severe osteoporosis after a fall involving fractures to 3 lumbar vertebrae. According to a letter from her consultant to her GP, the consultant seemingly wants her to go onto zoledronic acid plus teriparatide. We're due to discuss
Hi everyone, newbie here. My wife is about to go onto treatment for fairly severe osteoporosis after a fall involving fractures to 3 lumbar vertebrae. According to a letter from her consultant to her GP, the consultant seemingly wants her to go onto zoledronic acid plus teriparatide. We're due to discuss
tcpace
in
Osteoporosis Support
7 months ago
Vimpat is working for severe RLS and PLMD
Iāve had almost complete resolution of my RLS on Vimpat (lacosamide) now at 150 mg at 10 am and 10 pm. This is a remarkable turnaround in my symptoms. I started on 50 twice a day and the effect started to wane with a tolerable amount of breakthrough RLS. I increased to 100 twice a day after several weeks
Iāve had almost complete resolution of my RLS on Vimpat (lacosamide) now at 150 mg at 10 am and 10 pm. This is a remarkable turnaround in my symptoms. I started on 50 twice a day and the effect started to wane with a tolerable amount of breakthrough RLS. I increased to 100 twice a day after several weeks
SleeplessinNC
in
Restless Legs Syndrome
2 months ago
Intermittent RLS: why carbidopa/levodopa????
Can anyone enlighten me as to why the Mayo Clinic suggests carbidopa/levodopa (sinemet) as prn therapy as opposed to ropinorole/pramipexole? I used to have persistent RLS (managed with ropinorole) which thankfully stopped after I stopped my SSRI. Now itās intermittent and I canāt understand why I should
Can anyone enlighten me as to why the Mayo Clinic suggests carbidopa/levodopa (sinemet) as prn therapy as opposed to ropinorole/pramipexole? I used to have persistent RLS (managed with ropinorole) which thankfully stopped after I stopped my SSRI. Now itās intermittent and I canāt understand why I should
Petru
in
Restless Legs Syndrome
2 months ago
DX 5 years on Dec 26th. What Iāve learned about my PD. Please Read! It might be helpful.
PD is very common in my family. My dad and his dad had it. I have almost no hope they will ever cure it because itās so complex. Here is what caused my Parkinsonās. (IMO) 1.Genetics. This is something you cannot change. I know my genes have issues with clearing out toxins? PD is a man made disease
PD is very common in my family. My dad and his dad had it. I have almost no hope they will ever cure it because itās so complex. Here is what caused my Parkinsonās. (IMO) 1.Genetics. This is something you cannot change. I know my genes have issues with clearing out toxins? PD is a man made disease
38yroldmale
in
Cure Parkinson's
7 months ago
oxycodone and buprenorphine experiment
as you all may know, I thought buprenorphine was causing some pain issues so I quit taking it and went back to 5 mg of oxycodone three times a day. I gave it a solid month to be sure. this was a terrible terrible mistake. it appears the buprenorphine has changed my body. The oxy was not only mostly
as you all may know, I thought buprenorphine was causing some pain issues so I quit taking it and went back to 5 mg of oxycodone three times a day. I gave it a solid month to be sure. this was a terrible terrible mistake. it appears the buprenorphine has changed my body. The oxy was not only mostly
Marlayna67
in
Restless Legs Syndrome
3 months ago
Hives
Hi Everyone! Disgusting outbreak of hives. I have been lucky - been awhile. Usually later on in the summer. any recās? I am on the east coast not too sunny yet OTC & calamine. chill Any suggestions? š±āļø Ty
Hi Everyone! Disgusting outbreak of hives. I have been lucky - been awhile. Usually later on in the summer. any recās? I am on the east coast not too sunny yet OTC & calamine. chill Any suggestions? š±āļø Ty
Tennisbum
in
Hughes Syndrome APS Forum
3 months ago
Good news on the bone density front
Hi, this group is helpful and supportive and feels like an extended family. So I just wanted to share a bit of good news. I had a DXA 18 months ago not long after starting Prednisolone and my scores were: -0.1 in the spine which was healthy but not so good in the hip: -1.9 Total Hip T score
Hi, this group is helpful and supportive and feels like an extended family. So I just wanted to share a bit of good news. I had a DXA 18 months ago not long after starting Prednisolone and my scores were: -0.1 in the spine which was healthy but not so good in the hip: -1.9 Total Hip T score
Animalover65
in
PMRGCAuk
7 months ago
ED after SBRT?
Hi All, I am still debating AS vs SBRT at this time, although My urologist and RO plus NY Proton Center are telling me I should move forward with treatment. My urologist put me on Cialis to help with a bit of an enlarged prostate and slower urinary flow. It seems to have helped. I saw on a Prostate
Hi All, I am still debating AS vs SBRT at this time, although My urologist and RO plus NY Proton Center are telling me I should move forward with treatment. My urologist put me on Cialis to help with a bit of an enlarged prostate and slower urinary flow. It seems to have helped. I saw on a Prostate
LBRV711
in
Prostate Cancer Network
9 months ago
Prebiotic Probiotic Antibiotic... What's the deal?
Ok... Antibiotic is just added to the post title for rhyming. This post is not about antibiotic. So what is this about? Bacillus Subtilis PXN21 beneficial for PD... And Bio-Kult sells out. Thankfully pvw2 pointed out that any Subtilis strain works L. Plantarum PS128 beneficial for PD... And
Ok... Antibiotic is just added to the post title for rhyming. This post is not about antibiotic. So what is this about? Bacillus Subtilis PXN21 beneficial for PD... And Bio-Kult sells out. Thankfully pvw2 pointed out that any Subtilis strain works L. Plantarum PS128 beneficial for PD... And
JayPwP
in
Cure Parkinson's
3 months ago
Latest Results for Advice
December 2023
TSH
2.240
mIU/L - (Range: 0.27 - 4.2) Free T3 X
2.9
pmol/L - (Range: 3.1 - 6.8) Free Thyroxine
18.2
pmol/L - (Range: 12 - 22) CRP HS
0.974
mg/L - (Range: < 3) Ferritin
144.00
ug/L - (Range: 30 - 650) Folate - Serum
33.5
nmol/L - (
December 2023
TSH
2.240
mIU/L - (Range: 0.27 - 4.2) Free T3 X
2.9
pmol/L - (Range: 3.1 - 6.8) Free Thyroxine
18.2
pmol/L - (Range: 12 - 22) CRP HS
0.974
mg/L - (Range: < 3) Ferritin
144.00
ug/L - (Range: 30 - 650) Folate - Serum
33.5
nmol/L - (
Albaangel
in
Thyroid UK
7 months ago
How to handle going off mirapex
My neurologist decided to take me off mirapex. This is a new neurologist since mine retired. She specializes in sleep problems. I also have sleep apnea. I dont know why she decided to take me off mirapex. When she told me I was in a state of shock. I also take oxycodone. She is taking me off
My neurologist decided to take me off mirapex. This is a new neurologist since mine retired. She specializes in sleep problems. I also have sleep apnea. I dont know why she decided to take me off mirapex. When she told me I was in a state of shock. I also take oxycodone. She is taking me off
lorri214
in
Restless Legs Syndrome
3 months ago
Prolia
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
Purplegloss
in
PMRGCAuk
7 months ago
Pee problems
Lately my hypochondria has been in over-drive. I have incontinence. That is, when I feel like I'm done , and zip -up, I shortly see fluid has soaked into my denims. I use Myrbetriq, a drug to lessen bladder spasms. It works, that is, when I'm done I don't feel the urge to continue peeing
Lately my hypochondria has been in over-drive. I have incontinence. That is, when I feel like I'm done , and zip -up, I shortly see fluid has soaked into my denims. I use Myrbetriq, a drug to lessen bladder spasms. It works, that is, when I'm done I don't feel the urge to continue peeing
kaypeeoh
in
Cure Parkinson's
3 months ago
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