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Experiences with
Mast cell activation syndrome (MCAS)
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The road ahead
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
steve_canada
in
CLL Support
3 years ago
I'm new here
Have had RLS for approx 25 years with varying degrees of discomfort. Experienced rebound and possibly augmentation with sinemet, Took pramipexole for about ten years and switched to ropinirole three years ago when pramipexole was no longer effective. Am now definitely experiencing augmentation with
Have had RLS for approx 25 years with varying degrees of discomfort. Experienced rebound and possibly augmentation with sinemet, Took pramipexole for about ten years and switched to ropinirole three years ago when pramipexole was no longer effective. Am now definitely experiencing augmentation with
goonerguy
in
Restless Legs Syndrome
4 years ago
Augmenting on everything
Hi, I've been on codeine phosphate 60mg for the past 6 months and it's been fantastic but once again I seem to be augmenting on it, I've augmented on everything, tramadol, dopamine agonists, etc.. I really thought codeine was going to work this time, iron supplements really helped over the past 2 years
Hi, I've been on codeine phosphate 60mg for the past 6 months and it's been fantastic but once again I seem to be augmenting on it, I've augmented on everything, tramadol, dopamine agonists, etc.. I really thought codeine was going to work this time, iron supplements really helped over the past 2 years
Loopylegs
in
Restless Legs Syndrome
4 years ago
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Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
colinparker1967
in
MPN Voice
4 years ago
Duloxetine query
Hi All - I commenced Duloxetine x3 weeks ago come next Fri. and I am struggling with sleep. Has anyone else experienced this? I generally sleep well for the first 3-4 hrs and then wake go to sleep wake go to sleep - last night I think I woke about x8. My sleep seems really light. I am normally a very
Hi All - I commenced Duloxetine x3 weeks ago come next Fri. and I am struggling with sleep. Has anyone else experienced this? I generally sleep well for the first 3-4 hrs and then wake go to sleep wake go to sleep - last night I think I woke about x8. My sleep seems really light. I am normally a very
Gypsy2220
in
NRAS
4 years ago
Finally diagnosed with fibromyalgia and also degenerative disc disease does anyone suffer with both?
Hi everyone hope you are all well. I have finally been diagnosed with fibromyalgia after 4 years back and forth. It actually feels like a relief to know it's not all in my head. I have also been diagnosed with degenerative disc disease particularly severe in my lower back do any of you on here have this
Hi everyone hope you are all well. I have finally been diagnosed with fibromyalgia after 4 years back and forth. It actually feels like a relief to know it's not all in my head. I have also been diagnosed with degenerative disc disease particularly severe in my lower back do any of you on here have this
Purplestaffie
in
Fibromyalgia Action UK
4 years ago
Is this restless leg syndrome?
Hi , can l ask a question about my strange leg sensations please? I have been waking up in the middle of the night to what l can only describe as a buzzing feeling in the bed that l feel in my thighs and l have been blaming the hubby for weeks. He gets tense and restless in bed so l thought it was him
Hi , can l ask a question about my strange leg sensations please? I have been waking up in the middle of the night to what l can only describe as a buzzing feeling in the bed that l feel in my thighs and l have been blaming the hubby for weeks. He gets tense and restless in bed so l thought it was him
Hidden
in
Restless Legs Syndrome
4 years ago
Eyes
I recently wrote about my dry eyes. I have been to the opticians dry eye clinic and am doing everything he said. I also have another appointment with him later this month. I don't seem to see any improvement. About two days my eyes were quite good but then they go back to how they were. The thing I am
I recently wrote about my dry eyes. I have been to the opticians dry eye clinic and am doing everything he said. I also have another appointment with him later this month. I don't seem to see any improvement. About two days my eyes were quite good but then they go back to how they were. The thing I am
Bailybiscuit
in
NRAS
4 years ago
Does this mean I’m magnesium deficient?
Hello. This is my first post, but I’ve been lurking for a while & can only thank you beautiful people for the knowledge and personal experiences that you so kindly share with people like myself. I’ve been suffering with RLS for many years ( I am 44 yrs old female.) I actually didn’t know that my
Hello. This is my first post, but I’ve been lurking for a while & can only thank you beautiful people for the knowledge and personal experiences that you so kindly share with people like myself. I’ve been suffering with RLS for many years ( I am 44 yrs old female.) I actually didn’t know that my
trishiapp28
in
Restless Legs Syndrome
4 years ago
Gene SRSF2
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
ktaylor5563
in
MPN Voice
4 years ago
anti parietal cell antibody test For b12
anti parietal cell antibody test For b12 is it worth ?
anti parietal cell antibody test For b12 is it worth ?
Ulrich-vi
in
Pernicious Anaemia Society
4 years ago
Ozone disinfector & sanitizer ?
The users of C-PAP machines for sleep apnea are recommended to use ozone disinfectors-sanitizers for their masks and hoses. The mask and hose is put into a tank with an activated ozone generator. I now use it also for additional disinfection (after washing and drying ) of face masks for virus-protection
The users of C-PAP machines for sleep apnea are recommended to use ozone disinfectors-sanitizers for their masks and hoses. The mask and hose is put into a tank with an activated ozone generator. I now use it also for additional disinfection (after washing and drying ) of face masks for virus-protection
janvog
in
CLL Support
4 years ago
Good news at 12 week scan 🌈🎉
Finally feel like I can relax after seeing a very relaxed baby today. 😀. In fact baby was so relaxed the Sonographer was unable to get the measurements she needed for the Down syndrome test. We will get a blood test at 16 weeks instead. She did warn me not to be surprised if my results come back high
Finally feel like I can relax after seeing a very relaxed baby today. 😀. In fact baby was so relaxed the Sonographer was unable to get the measurements she needed for the Down syndrome test. We will get a blood test at 16 weeks instead. She did warn me not to be surprised if my results come back high
Hope76
in
Fertility Network UK
4 years ago
Has anyone used Dipyridamole with effect for RLS?
I read that in 2014 and 2015 , Dr Ferre receieved grants from the RLS Foundation to more closely examine how dopamine and glutamate work in the brain. Apparently he found that low levels of receptors of adenosine, a chemical in the brain that regulates neurochemicals, lead to abnormally high levels
I read that in 2014 and 2015 , Dr Ferre receieved grants from the RLS Foundation to more closely examine how dopamine and glutamate work in the brain. Apparently he found that low levels of receptors of adenosine, a chemical in the brain that regulates neurochemicals, lead to abnormally high levels
mateloch
in
Restless Legs Syndrome
4 years ago
Grade 2 prolapse 29 years old and pregnancy
Hi I’m 29 and I have a grade 2 uterine prolapse I have had 2 children and recently lost 2 by miscarriage, I have had no support no guidance has anyone else been through this, or know anyone that has .
Hi I’m 29 and I have a grade 2 uterine prolapse I have had 2 children and recently lost 2 by miscarriage, I have had no support no guidance has anyone else been through this, or know anyone that has .
Yellowflow
in
Pelvic Pain Support Network
4 years ago
Bipolar Parkinsonism
I'm coining a new term - bipolar Parkinsonism! Symptoms are extreme one day and practically non existent the next. I have no idea what triggers this either way. Monday my symptoms were off the charts, highest anxiety, shaky as can be, noticeable bradykinesia. Worked hard 10 hours. Fasted all day till
I'm coining a new term - bipolar Parkinsonism! Symptoms are extreme one day and practically non existent the next. I have no idea what triggers this either way. Monday my symptoms were off the charts, highest anxiety, shaky as can be, noticeable bradykinesia. Worked hard 10 hours. Fasted all day till
bassofspades
in
Cure Parkinson's
4 years ago
Long term steroid use, looking for advice .
After having a ☎️ conversation with my consultant ( who strangely constantly referred to me being a better man than her 🤔 ) and numerous exasabations it has been decided to place me on 10mg a day prednisolone , I have done a little home work on what to expect but ( there's always a but ) has anyone
After having a ☎️ conversation with my consultant ( who strangely constantly referred to me being a better man than her 🤔 ) and numerous exasabations it has been decided to place me on 10mg a day prednisolone , I have done a little home work on what to expect but ( there's always a but ) has anyone
soulboy118
in
Lung Conditions Community Forum
4 years ago
Neurologist in Dallas who is open to opiates for RLS?
Long story short, I had a terrible experience with the neurologist I went to see earlier this year after trying to get off ropinerole due to lactation suppression and augmentation issues. Current neurologist just wants to keep increasing my dose of ropinerole, which I know is a recipe for disaster. Gabapentin
Long story short, I had a terrible experience with the neurologist I went to see earlier this year after trying to get off ropinerole due to lactation suppression and augmentation issues. Current neurologist just wants to keep increasing my dose of ropinerole, which I know is a recipe for disaster. Gabapentin
Newmomma567
in
Restless Legs Syndrome
4 years ago
Phenergan addiction
I have been taking Phenergan for 10 years to help me sleep, I’m now suffering with restless legs & want to stop taking the phenergan, any advice please?
I have been taking Phenergan for 10 years to help me sleep, I’m now suffering with restless legs & want to stop taking the phenergan, any advice please?
Boxer215
in
Restless Legs Syndrome
4 years ago
Help with daughters results please
My daughter is 22 and has had hypothyroidism since she was 14. For quite a while she has been extremely tired, cold all the time, sleeping 10 hours a night but still tired when waking. Her medichecks results are TSH 0.26 (0.27 -4.2) T4 17.7 (12 -22) T3 5.27 (3.1 - 6.8) TGA 45.7 (<115) TPA 48.5 (<34
My daughter is 22 and has had hypothyroidism since she was 14. For quite a while she has been extremely tired, cold all the time, sleeping 10 hours a night but still tired when waking. Her medichecks results are TSH 0.26 (0.27 -4.2) T4 17.7 (12 -22) T3 5.27 (3.1 - 6.8) TGA 45.7 (<115) TPA 48.5 (<34
Triciatextiles
in
Thyroid UK
4 years ago
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