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Mast cell activation syndrome (MCAS)
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Latest Test results & Drs appointment
Would appreciate feedback on Thyroid test done with Medichecks. Fasting test. 9am. Last dose of Accord Levo previous morning. I have been Gluten free for over 12 months(not coeliac)I am Hasimoto TSH 1.19 (0.27 -4.2) Free T3 4.2 (3.1-6.8) T4 21.1 (12-22) Vit D 63 (50-200) VitB12
Would appreciate feedback on Thyroid test done with Medichecks. Fasting test. 9am. Last dose of Accord Levo previous morning. I have been Gluten free for over 12 months(not coeliac)I am Hasimoto TSH 1.19 (0.27 -4.2) Free T3 4.2 (3.1-6.8) T4 21.1 (12-22) Vit D 63 (50-200) VitB12
rick2525
in
Thyroid UK
2 years ago
Good Planning Can Work.
Yesterday (Saturday) I had one of the loveliest and most memorable days that I've had for some time......I went into London to meet my DIL-to-be, to see her in the wedding dress she'd shortlisted as, 'the one'! The date had been agreed and on the calendar for a few months but I was becoming increasingly
Yesterday (Saturday) I had one of the loveliest and most memorable days that I've had for some time......I went into London to meet my DIL-to-be, to see her in the wedding dress she'd shortlisted as, 'the one'! The date had been agreed and on the calendar for a few months but I was becoming increasingly
Kendrew
in
PMRGCAuk
2 years ago
Ropinirole to gabapentin
I am in the process of moving from ropinirole to gabapentin. I'm now at 900mg of gabapentin and heading for 1200, and down to 3mg from 4mg of ropinirole. No obvious side effects so far. Any advice on staggering gabapentin across the day? I would have thought the aim is to eliminate RLS both during the
I am in the process of moving from ropinirole to gabapentin. I'm now at 900mg of gabapentin and heading for 1200, and down to 3mg from 4mg of ropinirole. No obvious side effects so far. Any advice on staggering gabapentin across the day? I would have thought the aim is to eliminate RLS both during the
danamias
in
Restless Legs Syndrome
2 years ago
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Trying to be hopeful?
Hi all you beauties! I’m needing some love right now. I’m currently 5wks3days. I’ve been having some minor brown discharge that has slowly increased in amount over the past week. Today I went to the bathroom and expecting brown I saw bright red blood. I’ve heard so many people say spotting is normal
Hi all you beauties! I’m needing some love right now. I’m currently 5wks3days. I’ve been having some minor brown discharge that has slowly increased in amount over the past week. Today I went to the bathroom and expecting brown I saw bright red blood. I’ve heard so many people say spotting is normal
Hopingforbaby_
in
Fertility Network UK
2 years ago
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
in
MPN Voice
2 years ago
Sjögren’s syndrome
I am suffering with bad Sjogren’s syndrome because of lupus which means I have dry eyes, dry nostrils, dry mouth, dry skin. Basically dry mucosa anywhere in my body. Does any one have this experience and what have you used to get rid of it. I have used preservative free eye drops as advised by the doctor
I am suffering with bad Sjogren’s syndrome because of lupus which means I have dry eyes, dry nostrils, dry mouth, dry skin. Basically dry mucosa anywhere in my body. Does any one have this experience and what have you used to get rid of it. I have used preservative free eye drops as advised by the doctor
favour6
in
LUPUS UK
2 years ago
Weaning off ropinirol
Hi! I have been told before but can’t remember how to wean myself off ropinirol, I’m currently down to 0.50mg at night but if I go lower than that I don’t sleep at all! Which isn’t helpful when I work full time, I’m in the uk so my doc won’t prescribe opioids, I’m already taking Gabapentin and that’s
Hi! I have been told before but can’t remember how to wean myself off ropinirol, I’m currently down to 0.50mg at night but if I go lower than that I don’t sleep at all! Which isn’t helpful when I work full time, I’m in the uk so my doc won’t prescribe opioids, I’m already taking Gabapentin and that’s
jaime77
in
Restless Legs Syndrome
2 years ago
Hip Replacement OP
I've been blessed and offered a cancellation for the hip op. Very last moment, but grabbed it as I've been reduced to a cripple. Had it last Saturday and I'm back home now learning how to walk again and get my knickers on without bending! Just to say the anaesthetist was great. Gave me methadoxatone
I've been blessed and offered a cancellation for the hip op. Very last moment, but grabbed it as I've been reduced to a cripple. Had it last Saturday and I'm back home now learning how to walk again and get my knickers on without bending! Just to say the anaesthetist was great. Gave me methadoxatone
oscarandchloe
in
PMRGCAuk
2 years ago
Am I entitled to IVF on the NHS
Hi all, after years of tests with my gynaecologist he has finally referred me to an IVF clinic and we had our first appointment today. The Doctor there has said she needs to do some research but she thinks because the Gynaecologist prescribed me Clomiphene that I may now not be entitled to IVF on the
Hi all, after years of tests with my gynaecologist he has finally referred me to an IVF clinic and we had our first appointment today. The Doctor there has said she needs to do some research but she thinks because the Gynaecologist prescribed me Clomiphene that I may now not be entitled to IVF on the
LillyZL
in
Fertility Network UK
2 years ago
MIN-102 update: summer 2022
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
wilburlois15
in
AMN EASIER
2 years ago
THC O- a 1 person mini experiment
I got my THC O in the mail last Monday and have taken it all week. Here are my personal conclusions. Keep in mind this is just my experience. It may differ for others. DOES IT WORK: Yes. It seems to have the same efficacy, mg to mg, as normal THC. WOULD I RECOMMEND IT: No. Not if you have other options
I got my THC O in the mail last Monday and have taken it all week. Here are my personal conclusions. Keep in mind this is just my experience. It may differ for others. DOES IT WORK: Yes. It seems to have the same efficacy, mg to mg, as normal THC. WOULD I RECOMMEND IT: No. Not if you have other options
Guitarpickin
in
Restless Legs Syndrome
2 years ago
Sleep Tracker Recommendations?
Hi all, I'm 53 and have had severe refractory RLS and PLMD for over 30 years now. As you can imagine, or probably know yourself, lack of sleep has been a nightmare for a long time. I'm looking for recommendations for sleep trackers as my doctors want to know when and how long I sleep. Because of the
Hi all, I'm 53 and have had severe refractory RLS and PLMD for over 30 years now. As you can imagine, or probably know yourself, lack of sleep has been a nightmare for a long time. I'm looking for recommendations for sleep trackers as my doctors want to know when and how long I sleep. Because of the
Rezcat11
in
Restless Legs Syndrome
2 years ago
Tramadol + Gabapentin
I have been on 100mg Tramadol and 1200mg Gabapentin for about 8 years now (after all the DA’s and augmentation). This last year getting up once or twice a night has turned into 3+ times and some very bad evenings and I believe I have reached tolerance in Tramadol. I won’t increase above 100mg as I fear
I have been on 100mg Tramadol and 1200mg Gabapentin for about 8 years now (after all the DA’s and augmentation). This last year getting up once or twice a night has turned into 3+ times and some very bad evenings and I believe I have reached tolerance in Tramadol. I won’t increase above 100mg as I fear
John_naylor
in
Restless Legs Syndrome
2 years ago
Anyone get chorea with aps?
Just wondering if anyone gets chorea with their aps? I haven't been diagnosed yet waiting for my 2nd test. I have been having these weird facial tics and arm/hand movements, usually followed by a seizure. Its just battling whsts happening to me. Then when I test positive for b2 glycoprotein and thought
Just wondering if anyone gets chorea with their aps? I haven't been diagnosed yet waiting for my 2nd test. I have been having these weird facial tics and arm/hand movements, usually followed by a seizure. Its just battling whsts happening to me. Then when I test positive for b2 glycoprotein and thought
Charts
in
Hughes Syndrome APS Forum
2 years ago
RLS and Mono (Epstein-Barr virus), any correlation?
Hi all, I'm testing an hypothesis about RLS and mono today. Short story, I had mono symptoms for months about two years go. I tested reactive for EBV VCA IgG EIA (mono) twice over a few months period. It eventually got better, but I still get those same symptoms randomly for a few days or a week at
Hi all, I'm testing an hypothesis about RLS and mono today. Short story, I had mono symptoms for months about two years go. I tested reactive for EBV VCA IgG EIA (mono) twice over a few months period. It eventually got better, but I still get those same symptoms randomly for a few days or a week at
GuillaumeL
in
Restless Legs Syndrome
2 years ago
Teva and dry mouth
I’ve written here before about the dry mouth I’ve had since just before Christmas. And about all the many tests and scans I’ve had in that time, all of which drew a blank. Then in March / April I picked up some more Levothyroxine packets from the pharmacist. On that occasion I was served by a particular
I’ve written here before about the dry mouth I’ve had since just before Christmas. And about all the many tests and scans I’ve had in that time, all of which drew a blank. Then in March / April I picked up some more Levothyroxine packets from the pharmacist. On that occasion I was served by a particular
HowNowWhatNow
in
Thyroid UK
2 years ago
Almost 18 years walking alone with no diagnosis to my vocal tic disorder.
Good Afternoon to you all. I am knew here. This morning I was given hope for my Vocal tic disorder. It was given a name FND. I had given up hope that there would be something that could be done to help my disability in this life, beside the many options of medication. Then finding you guys, people who
Good Afternoon to you all. I am knew here. This morning I was given hope for my Vocal tic disorder. It was given a name FND. I had given up hope that there would be something that could be done to help my disability in this life, beside the many options of medication. Then finding you guys, people who
DarkBlackberry
in
Functional Neurological Disorder - FND Hope
2 years ago
What happens when you end tocilizumab
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
Caroline2079
in
PMRGCAuk
2 years ago
I’m new and confused - diagnosed with Mast Cell Activation Syndrome
I suffer from I have multiple health conditions which are mostly related to my bladder (Interstitial Cystitis and Fowlers Syndrome) I have a suprapubic catheter in place and suffer from recurring and severe bladder infections. I am under the care of multiple specialists at different hospitals in London
I suffer from I have multiple health conditions which are mostly related to my bladder (Interstitial Cystitis and Fowlers Syndrome) I have a suprapubic catheter in place and suffer from recurring and severe bladder infections. I am under the care of multiple specialists at different hospitals in London
Jenb01
in
The UK Mastocytosis Support Group
3 years ago
Flash backs covid pneumonitis
Hi I’m nearly 6 months post ventilation from covid pneumonitis and the flash backs are now giving me bad panic attacks this is the worst I’ve ever been, I’m waiting for councilling due to start in 3 weeks had anyone get any coping tips that I could possibly try to stop or not be so bad with the flashbacks
Hi I’m nearly 6 months post ventilation from covid pneumonitis and the flash backs are now giving me bad panic attacks this is the worst I’ve ever been, I’m waiting for councilling due to start in 3 weeks had anyone get any coping tips that I could possibly try to stop or not be so bad with the flashbacks
Nala8573
in
ICUsteps
2 years ago
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