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Mast cell activation syndrome (MCAS)
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Grrr...12+ years of RLS
Have changed pills many times, first rope, then pramipexole, then gabapentine, and now horizant. I can’t sleep...take my pills as used, go to bed, and either left or right gets its normal 30sec-a-go-go. Maybe, I can sleep 2-3am for 3/4 hours, but it’s horrible. Read many posts...maybe I need do try
Have changed pills many times, first rope, then pramipexole, then gabapentine, and now horizant. I can’t sleep...take my pills as used, go to bed, and either left or right gets its normal 30sec-a-go-go. Maybe, I can sleep 2-3am for 3/4 hours, but it’s horrible. Read many posts...maybe I need do try
Scott_alter
in
Restless Legs Syndrome
5 years ago
Neurology update
Good morning all. Yesterday I saw a very nice neurologist who gave me a full neurological exam (including sticking pins into me) . His conclusion was that a) I'm not a witch, and, b) I have no discernable neurological problems. He was somewhat surprised to hear that the rheum had diagnosed fibromyalgia
Good morning all. Yesterday I saw a very nice neurologist who gave me a full neurological exam (including sticking pins into me) . His conclusion was that a) I'm not a witch, and, b) I have no discernable neurological problems. He was somewhat surprised to hear that the rheum had diagnosed fibromyalgia
Linda3009
in
PMRGCAuk
5 years ago
Pip update and dry eyes, mouth😵
Hello a while ago I posted about a PIP assessment.... Thank you any one who replied...sorry I didn't say 'thanks' back then. So I am waiting for them to decide whether I can still have PIP. Here's hoping🙄 On another note does any one have any thoughts on this - I am on the biologic tocilizumab. In recent
Hello a while ago I posted about a PIP assessment.... Thank you any one who replied...sorry I didn't say 'thanks' back then. So I am waiting for them to decide whether I can still have PIP. Here's hoping🙄 On another note does any one have any thoughts on this - I am on the biologic tocilizumab. In recent
Mouseling
in
NRAS
5 years ago
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Opiod withdrawal advice please
I'm currently rotating codeine and tramadol approximately every 4 or 5 months without any withdrawal symptoms. However I only ever use them for 5 days a week. I am considering using them every night but I'm concerned about possible withdrawal symptoms when I need to change drug.Has anyone experienced
I'm currently rotating codeine and tramadol approximately every 4 or 5 months without any withdrawal symptoms. However I only ever use them for 5 days a week. I am considering using them every night but I'm concerned about possible withdrawal symptoms when I need to change drug.Has anyone experienced
Jumpey
in
Restless Legs Syndrome
5 years ago
Advice needed please ... IVF drug protocol with low AMH
After six failed cycles of donor IUI my wife and I are moving on to IVF next month. We’ve had our drugs delivered to day and wow what a package ! My clinic have suggested 300IU fostimon then after so many days to start 150IU Meriofert with 150IU fostimon and use Testogel. My AMH is 2.1 age 35 and I’
After six failed cycles of donor IUI my wife and I are moving on to IVF next month. We’ve had our drugs delivered to day and wow what a package ! My clinic have suggested 300IU fostimon then after so many days to start 150IU Meriofert with 150IU fostimon and use Testogel. My AMH is 2.1 age 35 and I’
Amelia1984
in
Fertility Network UK
5 years ago
BETA HCG
Hi! I had a HCG blood test done and the reading came up as 0.4.... if I was pregnant I would have been very very early. What is considered a positive 5cg? Can you start of as negative HCG and raise to Positive
Hi! I had a HCG blood test done and the reading came up as 0.4.... if I was pregnant I would have been very very early. What is considered a positive 5cg? Can you start of as negative HCG and raise to Positive
Blublu99
in
Pregnancy and Parenting Support
5 years ago
hEDS and MCAS
Hi, I’ve recently got my hEDS diagnosis ( also got Fibro, migraines and PoTs) and alongside this I’ve been given a diagnosis of
Mast
Cell
Activation
Syndrome
.
Hi, I’ve recently got my hEDS diagnosis ( also got Fibro, migraines and PoTs) and alongside this I’ve been given a diagnosis of
Mast
Cell
Activation
Syndrome
.
Hrhs62
in
Ehlers-Danlos Support UK
5 years ago
Flare
PMR, FIBRO, GCA I went down from 2mg Rayos (Prednisone) to 1mg Rayos. Wow...burning pain in buttocks, painful stiff hips, mood swings, extreme fatigue. I went back up to 2mg Rayos. Everything has gotten better except for extreme fatigue. So frustrating...now I am back to chair yoga trying to improve
PMR, FIBRO, GCA I went down from 2mg Rayos (Prednisone) to 1mg Rayos. Wow...burning pain in buttocks, painful stiff hips, mood swings, extreme fatigue. I went back up to 2mg Rayos. Everything has gotten better except for extreme fatigue. So frustrating...now I am back to chair yoga trying to improve
Dream21
in
PMRGCAuk
5 years ago
Advice please
Hi everyone , sorry not been here a while again , but been feeling absolutely dreadful with symptoms still . Have got results from last blood test from medichecks. CRP HS 3.22mg/L range <5 FERRITIN 117 ug/L range 13 - 150 FOLATE 9.86 ug /L range > 3.89 VIT
Hi everyone , sorry not been here a while again , but been feeling absolutely dreadful with symptoms still . Have got results from last blood test from medichecks. CRP HS 3.22mg/L range <5 FERRITIN 117 ug/L range 13 - 150 FOLATE 9.86 ug /L range > 3.89 VIT
Sweetpea1157
in
Thyroid UK
5 years ago
Garlic and whole wheat bread are helpful
I noticed that my wife's spaghetti sauce seemed to help my RLS. After a few weeks I realized that it was the garlic in the sauce that seems to make a difference. Garlic alone will not get me safely through the night, but when combined with 24mg of codeine, 1.5mg of ropinirole, and 200mg of gapapentin
I noticed that my wife's spaghetti sauce seemed to help my RLS. After a few weeks I realized that it was the garlic in the sauce that seems to make a difference. Garlic alone will not get me safely through the night, but when combined with 24mg of codeine, 1.5mg of ropinirole, and 200mg of gapapentin
davidadill
in
Restless Legs Syndrome
5 years ago
Magnesium supplement for RLS
I have a couple of questions regarding the above: My functional doctor recommended Magnesium Malate at bedtime for RLS, however, I have seen a few comments on here saying that it shouldn't be taken within 2 hours of medications for RLS (I currently take ropinirole and gabapentin) and I take these between
I have a couple of questions regarding the above: My functional doctor recommended Magnesium Malate at bedtime for RLS, however, I have seen a few comments on here saying that it shouldn't be taken within 2 hours of medications for RLS (I currently take ropinirole and gabapentin) and I take these between
YodaDog
in
Restless Legs Syndrome
5 years ago
Troponin levels elevated
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Jalola
in
British Heart Foundation
5 years ago
Bone Marrow Transplant.
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Seifert_09
in
AMN EASIER
5 years ago
So many factors no answers
I started with symptoms of RLS when I was pregnant with my daughter, but thought it was due to being off work where I was on my feet 50-60 hours a week. It went away for years and slowly came back over the next few years. I was finally diagnosed in 2004 and put on ropinirole. Boy did that help. but then
I started with symptoms of RLS when I was pregnant with my daughter, but thought it was due to being off work where I was on my feet 50-60 hours a week. It went away for years and slowly came back over the next few years. I was finally diagnosed in 2004 and put on ropinirole. Boy did that help. but then
crazylegs1963
in
Restless Legs Syndrome
5 years ago
Parents Advisory Board
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tiss
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
liveurlife
Volunteer
in
LDN Research Trust
5 years ago
Prolia medication or Similar and dental treatment
Prolia: I broke a tooth last week and my Dentist said the tooth needs to come out but he didn't want the responsability if the gum didn't heal due to me having prolia injections. I checked with my GP yesterday and she confirmed that they advise not to have any dental work. I have a referral to see an
Prolia: I broke a tooth last week and my Dentist said the tooth needs to come out but he didn't want the responsability if the gum didn't heal due to me having prolia injections. I checked with my GP yesterday and she confirmed that they advise not to have any dental work. I have a referral to see an
Angels-delight
in
NRAS
5 years ago
Update on previous post but cannot find it 🙄
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Pamela60
in
PMRGCAuk
5 years ago
Just checking in my fellow IVF peeps
I am currently on day 4 of 50units of Buserelin at the start of the 1st FET cycle. Have to go in for a baseline scan on day 2 of cycle and then probably down to 20 units of Buserelin and patches and GOD knows what else...I haven't got that far....add into the mix, I have been to see a functional medicine
I am currently on day 4 of 50units of Buserelin at the start of the 1st FET cycle. Have to go in for a baseline scan on day 2 of cycle and then probably down to 20 units of Buserelin and patches and GOD knows what else...I haven't got that far....add into the mix, I have been to see a functional medicine
Yammie1973
in
Fertility Network UK
5 years ago
Alendronate Shows Promise as Maintenance Therapy for Osteoporosis
Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate alendronate (Binosto and Fosamax) can effectively maintain the gains in bone mineral density achieved with a year-long course of denosumab treatment in 91 percent of 126 patients who participated in a randomized clinical trial
Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate alendronate (Binosto and Fosamax) can effectively maintain the gains in bone mineral density achieved with a year-long course of denosumab treatment in 91 percent of 126 patients who participated in a randomized clinical trial
lupus-support1
Administrator
in
Hughes Syndrome APS Forum
5 years ago
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