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Sialic acid storage disorders
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horizant awful
Today was my first day taking horizant and probably my last. I cant lay down for more than a secon d. I am in such agony. tomorrow i will go back on mirapex if my legs dont get better. since it is a long weekend o dr. is not available I am walking and crying all night long. I think I need a new
Today was my first day taking horizant and probably my last. I cant lay down for more than a secon d. I am in such agony. tomorrow i will go back on mirapex if my legs dont get better. since it is a long weekend o dr. is not available I am walking and crying all night long. I think I need a new
lorri214
in
Restless Legs Syndrome
3 months ago
Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discuss my osteoporosis with? Thank you.
Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discus my osteoporosis with? Thank you. I have severe osteoporosis for 7+ years and despite being on alendronic acid 70mg once weekly for 7 years , my osteoporosis has worsened such that my advice a few
Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discus my osteoporosis with? Thank you. I have severe osteoporosis for 7+ years and despite being on alendronic acid 70mg once weekly for 7 years , my osteoporosis has worsened such that my advice a few
Kakally
in
PMRGCAuk
7 months ago
Permanent AFib
Started on Digoxin .25 daily for past six days and cut Lopressor down to 25 twice a day. Am going to try to wean off. HR 80-110. Generally do not feel well and am going to revisit ablation. I had blurring of vision and dizziness on higher doses of Lopressor alone. Last cardioversion only lasted
Started on Digoxin .25 daily for past six days and cut Lopressor down to 25 twice a day. Am going to try to wean off. HR 80-110. Generally do not feel well and am going to revisit ablation. I had blurring of vision and dizziness on higher doses of Lopressor alone. Last cardioversion only lasted
farewelltoarms
in
Atrial Fibrillation Support
3 months ago
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I am now able to tolerate antibiotics again after my nerves healed
Hello! I just want to give this update about my situation. I hope people on here find this because my situation was a nightmare and I think this can help people who are confused and not sure what to do or if they'll ever be able to tolerate antibiotics again (TL;DR: you will be able to if you can heal
Hello! I just want to give this update about my situation. I hope people on here find this because my situation was a nightmare and I think this can help people who are confused and not sure what to do or if they'll ever be able to tolerate antibiotics again (TL;DR: you will be able to if you can heal
Whoa182
in
Pernicious Anaemia Society
7 months ago
Ibandronic Acid
With aggravated osteoporosis my partner has been offered the choice of monthly doses of Bonviva or a six monthly injection. Which would be most effective to mitigate the osteoporosis while remaining compatible with an AF/pacemaker regime that includes Amias, Sotalol, Furosemide, and Apixaban?.
With aggravated osteoporosis my partner has been offered the choice of monthly doses of Bonviva or a six monthly injection. Which would be most effective to mitigate the osteoporosis while remaining compatible with an AF/pacemaker regime that includes Amias, Sotalol, Furosemide, and Apixaban?.
rathlee
in
AF Association
7 months ago
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
3 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
3 months ago
marked facet arthropathy lower lumbar spine
I have also been diagnosed with spinal arthropathy anyone else got this this, I wander if zoledronic acid infusion will be any help with this.
I have also been diagnosed with spinal arthropathy anyone else got this this, I wander if zoledronic acid infusion will be any help with this.
Radars
in
Bone Health and Osteoporosis UK
7 months ago
Teriparatide - what to do next?
I’ve recently finished 2 years of Teriparatide injections. Endocrinologist wants me to take Alendronic acid tablets but I’m not keen. Teriparatide is the first treatment I’ve had and osteoporosis classed as severe. One fracture of L2 few years back. I wondered what protocol other people have tried after
I’ve recently finished 2 years of Teriparatide injections. Endocrinologist wants me to take Alendronic acid tablets but I’m not keen. Teriparatide is the first treatment I’ve had and osteoporosis classed as severe. One fracture of L2 few years back. I wondered what protocol other people have tried after
Snowybear
in
Bone Health and Osteoporosis UK
7 months ago
Osteoporosis - treatment or not ??
Hello all - I have learnt so much reading the daily posts, knowledgeable responses and exchange of experiences - if only the medical professionals were as expert? I was diagnosed with PMR December '22 and have reduced to 10mg Pred (from 20mg) this month. I am mid a lifestyle changing move to the Isle
Hello all - I have learnt so much reading the daily posts, knowledgeable responses and exchange of experiences - if only the medical professionals were as expert? I was diagnosed with PMR December '22 and have reduced to 10mg Pred (from 20mg) this month. I am mid a lifestyle changing move to the Isle
mullochs
in
PMRGCAuk
7 months ago
IV Zoledronic acid.
unfortunately time to move to Zoledronic acic fractures happening. Tried calcium and Vit D weight bearing exercises. Has anybody got any advice before I travel down the road of no return!!! thank you in advance.
unfortunately time to move to Zoledronic acic fractures happening. Tried calcium and Vit D weight bearing exercises. Has anybody got any advice before I travel down the road of no return!!! thank you in advance.
Lion321
in
Advanced Prostate Cancer
7 months ago
medication timing???
I am now almost 4 weeks free of Pramipexole 😀 I feel like I am over the worst ( back from hell) but I’m 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 😀 I feel like I am over the worst ( back from hell) but I’m 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
3 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
3 months ago
Vimpat is working for severe RLS and PLMD
I’ve 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
I’ve 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
3 months ago
Pain relief advice
Hi, I had a laprocospy in November 2022. Since then I have had a miscarriage and been really struggling with ongoing severe pain and swelling. Awaiting a further laprocospy but this could be 12-18 months before I get a date. I have been contemplating going privately or trying GnRh injections until I
Hi, I had a laprocospy in November 2022. Since then I have had a miscarriage and been really struggling with ongoing severe pain and swelling. Awaiting a further laprocospy but this could be 12-18 months before I get a date. I have been contemplating going privately or trying GnRh injections until I
November22
in
Endometriosis UK
7 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 it’s intermittent and I can’t 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 it’s intermittent and I can’t understand why I should
Petru
in
Restless Legs Syndrome
3 months ago
Has anyone taken a non-medication route and seen an improvement in their osteoporosis through only supplements/diet/exercise?
Hello, I have osteoporosis and been advised to take medication - either HRT or Alendronate. However, I as an alternative wondered whether anyone who is not on medication has seen an improvement in their osteoporosis through only supplements/diet/exercise?
Hello, I have osteoporosis and been advised to take medication - either HRT or Alendronate. However, I as an alternative wondered whether anyone who is not on medication has seen an improvement in their osteoporosis through only supplements/diet/exercise?
Houseelf
in
Bone Health and Osteoporosis UK
7 months ago
Zoledronic Acid - rare side effects?
I had an infusion on 1 March 2023 in the UK....and immediately had awful muscle pain and stomach issues - including vomiting, nausea, feeling of grit rubbing my stomach wall, severe stomach distension and pain on eating, loss of appetite, change in taste, alternating constipation and diarrhoea. I am
I had an infusion on 1 March 2023 in the UK....and immediately had awful muscle pain and stomach issues - including vomiting, nausea, feeling of grit rubbing my stomach wall, severe stomach distension and pain on eating, loss of appetite, change in taste, alternating constipation and diarrhoea. I am
Green_girl
in
Bone Health and Osteoporosis UK
7 months ago
Is all the extra medication needed?
Hello everyone. I was diagnosed with PMR just over 2 years ago and have posted on this invaluable site a few times. After high doses of Pred at the beginning with a possible threat of GCA,, which did not occur, I have yo-yoed a bit with stresses in life. However I am currently on 7 and a half mg and
Hello everyone. I was diagnosed with PMR just over 2 years ago and have posted on this invaluable site a few times. After high doses of Pred at the beginning with a possible threat of GCA,, which did not occur, I have yo-yoed a bit with stresses in life. However I am currently on 7 and a half mg and
Stargiver
in
PMRGCAuk
7 months ago
Bang for your buck
Supplements, medication, procedures Can someone tell me what supplements should be used with Parkinsons Among the various therapies that have shown at least some effect in the animal and/or human model are Carbadopa/Levadopa Actylcholine Actigal/Ursolic acid Adderil (amphetamine) Alcohol Alpha
Supplements, medication, procedures Can someone tell me what supplements should be used with Parkinsons Among the various therapies that have shown at least some effect in the animal and/or human model are Carbadopa/Levadopa Actylcholine Actigal/Ursolic acid Adderil (amphetamine) Alcohol Alpha
heartinmotion
in
Cure Parkinson's
4 months ago
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