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Experiences with
Mast cell activation syndrome (MCAS)
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Fed up - any advice?
Hello lovelies, I’m sure you’ve all felt like this at some point but today I feel truly fed up. My cyst was still there at my second can yesterday and now have to wait another week to see if it goes on it’s own with my period. Then another 3 weeks to start buserelin again, 2 weeks for another period
Hello lovelies, I’m sure you’ve all felt like this at some point but today I feel truly fed up. My cyst was still there at my second can yesterday and now have to wait another week to see if it goes on it’s own with my period. Then another 3 weeks to start buserelin again, 2 weeks for another period
Millbanks
in
Fertility Network UK
4 years ago
post stem cell transplant covid question
I am now approaching 21 months post transplant (MF) and feeling well. My last consultation and bloods was about 3 months ago. I've only had phone consultations since March last year and so I'm hoping my next appointment, due in June, will be face to face at the QE B'ham where I had the transplant. I'm
I am now approaching 21 months post transplant (MF) and feeling well. My last consultation and bloods was about 3 months ago. I've only had phone consultations since March last year and so I'm hoping my next appointment, due in June, will be face to face at the QE B'ham where I had the transplant. I'm
Dodders
in
MPN Voice
3 years ago
Stem cell replacement
Has anyone traveled down the road of having stem cell/bone marrow transplant? I have MF It looks like it maybe a possibility for me.
Has anyone traveled down the road of having stem cell/bone marrow transplant? I have MF It looks like it maybe a possibility for me.
Grizly
in
MPN Voice
3 years ago
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Help with blood results
Hello, I am looking for help with my results. I am still symptomatic. I took my Levothyroxine (150mg) 24 hours before and my last T3 (20mg) 12 hours before. TSH - 0.005 (0.27-4.2) FREE T3 - 7.39 (3.1-6.8) T4 - 22.7 - (12-22) TPA (Antibodies) 226 (<34) Vit D - 104 (50-175) B12 - 150 (37.5-187.5) Folate
Hello, I am looking for help with my results. I am still symptomatic. I took my Levothyroxine (150mg) 24 hours before and my last T3 (20mg) 12 hours before. TSH - 0.005 (0.27-4.2) FREE T3 - 7.39 (3.1-6.8) T4 - 22.7 - (12-22) TPA (Antibodies) 226 (<34) Vit D - 104 (50-175) B12 - 150 (37.5-187.5) Folate
HarrietJW
in
Thyroid UK
3 years ago
Heavy legs and Parkinson’s High Every body
This is Cinderella63 I have not been to visit for quite a time I can’t really explain the reason why I havnt been if I spoke the truth it’s because I’ve had quite a long spell of depression but I do believe I am coming out of it and I want to visit more often I mentioned heavy legs that is the
This is Cinderella63 I have not been to visit for quite a time I can’t really explain the reason why I havnt been if I spoke the truth it’s because I’ve had quite a long spell of depression but I do believe I am coming out of it and I want to visit more often I mentioned heavy legs that is the
Cinderella63
in
Restless Legs Syndrome
3 years ago
Does it really get better after Pramipexole?
Hello Everyone. My husband experiences RLS, since he was 13. For many years he was untreated, but around the time of university it got bad -- so he went to a neurologist and was put on DA's. For the first couple years, he was on something he can't remember, but then got switched to Pramipexole. He estimates
Hello Everyone. My husband experiences RLS, since he was 13. For many years he was untreated, but around the time of university it got bad -- so he went to a neurologist and was put on DA's. For the first couple years, he was on something he can't remember, but then got switched to Pramipexole. He estimates
Ananda00
in
Restless Legs Syndrome
3 years ago
Effects of stress on RLS
I have been taking gabapentin (300) in the evening for a while now. Up until a few months ago this was working pretty well, if I woke it wasn’t for long. Now I’m finding I can sometimes get uncomfortable in the evening and my sleep has really deteriorated...waking multiple times with achy restless legs
I have been taking gabapentin (300) in the evening for a while now. Up until a few months ago this was working pretty well, if I woke it wasn’t for long. Now I’m finding I can sometimes get uncomfortable in the evening and my sleep has really deteriorated...waking multiple times with achy restless legs
Lapsedrunner
in
Restless Legs Syndrome
3 years ago
Barrett’s esophagus
I’m having a terrible time with acid reflux. I don’t feel that bad but my esophagus is not doing well. Tried PPI’s but the side effects were awful. I was then changed to Famotidine but having side effects with this too. I’ve researched diet and know I have to make some changes. Giving up my nightly wine
I’m having a terrible time with acid reflux. I don’t feel that bad but my esophagus is not doing well. Tried PPI’s but the side effects were awful. I was then changed to Famotidine but having side effects with this too. I’ve researched diet and know I have to make some changes. Giving up my nightly wine
Blackcatlover
in
PMRGCAuk
3 years ago
Insomnia while on Methadone ?
I augmented on Ropinerole. Tried several other meds and for the past two months have been taking 2.5 mg Methadone. I started out taking 5 mg at night with instructions from my Doctor to try cutting in half for a even lower dose which i did and it seemed to work however the past few weeks I go to
I augmented on Ropinerole. Tried several other meds and for the past two months have been taking 2.5 mg Methadone. I started out taking 5 mg at night with instructions from my Doctor to try cutting in half for a even lower dose which i did and it seemed to work however the past few weeks I go to
MFNS
in
Restless Legs Syndrome
3 years ago
Knee replacement plus worsening rls
After coming off pramepexole due to augmentation, my doctor gave me longtec and shorttec, ocycodone to help with withdrawal symptoms. I was already on gabapentin for neuropathy I had a total knee replacement 2 weeks ago and experiencing awful return of RLS, mixed with a lot of pain and very little sleep
After coming off pramepexole due to augmentation, my doctor gave me longtec and shorttec, ocycodone to help with withdrawal symptoms. I was already on gabapentin for neuropathy I had a total knee replacement 2 weeks ago and experiencing awful return of RLS, mixed with a lot of pain and very little sleep
Pennyfarthing
in
Restless Legs Syndrome
3 years ago
Lime in water
Hi all, I have been taking calcium but don't like doing so, and need magnesium as a consequence too. But now I have reduced to 2mg and I have my own well with lots of lime (CaCO3) in it. I was thinking that getting it all the tea I drink, several cups, several times a day may be enough. I have to keep
Hi all, I have been taking calcium but don't like doing so, and need magnesium as a consequence too. But now I have reduced to 2mg and I have my own well with lots of lime (CaCO3) in it. I was thinking that getting it all the tea I drink, several cups, several times a day may be enough. I have to keep
Harbel
in
PMRGCAuk
3 years ago
Methadone causes extreme dizziness
I have tried every medication there is for RLS. Pramipexole worked for awhile but I went thru hell w augmentation. They’ve now tried all the opiods. Everything causes so much dizziness. I currently take 6mg of Methadone, & 200 mg Gabapentin. I can’t take enough Methadone to control the RLS, & only
I have tried every medication there is for RLS. Pramipexole worked for awhile but I went thru hell w augmentation. They’ve now tried all the opiods. Everything causes so much dizziness. I currently take 6mg of Methadone, & 200 mg Gabapentin. I can’t take enough Methadone to control the RLS, & only
Barb574
in
Restless Legs Syndrome
3 years ago
Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
Manouche
in
MPN Voice
3 years ago
Hitting tics
Hiya.. how do I stop myself from having hitting tics? I randomly try to hit my 13 year old shihztu when I'm angry and I don't know why. Is it apart of autism or am I having a different tic with another problem with me?
Hiya.. how do I stop myself from having hitting tics? I randomly try to hit my 13 year old shihztu when I'm angry and I don't know why. Is it apart of autism or am I having a different tic with another problem with me?
lilpawzco
in
Autism Support
4 years ago
Mum in pain with restless legs.
My mum has suffered with restless legs for years but she is now struggling with pain rather than restless legs. She has been back to GP today and was told she needs to wait for appointment from clinic which should come next week. She is in a terrible way, no sleep and pain now. Any suggestions what
My mum has suffered with restless legs for years but she is now struggling with pain rather than restless legs. She has been back to GP today and was told she needs to wait for appointment from clinic which should come next week. She is in a terrible way, no sleep and pain now. Any suggestions what
Missysmamma1811
in
Restless Legs Syndrome
3 years ago
Biological treatments
I had some blood test to see if I meet the criteria for biologocal asthma treatments, my cons told me my eosinophils count needs to be 0.3 or above and my last count in October was 0.4. My cons didn't say in my letter wether I qualify or not with this result and wants to do my tests in a few months
I had some blood test to see if I meet the criteria for biologocal asthma treatments, my cons told me my eosinophils count needs to be 0.3 or above and my last count in October was 0.4. My cons didn't say in my letter wether I qualify or not with this result and wants to do my tests in a few months
Angelgoth
in
Asthma Community Forum
4 years ago
Shortness of breath remedy? Methadone fixed RLS for years. Suddenly short of breath keeps me awake. Need solution.
Methadone 10mg resolved my RLS for years. Gradually supplemented it with THC to relax before bed, and Recently took too much THC and went into panic short of breath feeling. Ativan took care of it. Thought I’d be back to normal (stopped THC), but now short of breath every night. Ativan every night not
Methadone 10mg resolved my RLS for years. Gradually supplemented it with THC to relax before bed, and Recently took too much THC and went into panic short of breath feeling. Ativan took care of it. Thought I’d be back to normal (stopped THC), but now short of breath every night. Ativan every night not
Graceman
in
Restless Legs Syndrome
3 years ago
Take Ropinirole and Gabapentin at the Same Time?
I have been battling RLS with 5 mg Ropinirole at night for about 3 years with no augmentation YET. I recently fell and fractured my back where discs are bulging. Entire spine riddled with arthritis and osteoporosis. Pain is crippling. To ease the pain, doctor wants me to add Gabapentin with the Ropinirole
I have been battling RLS with 5 mg Ropinirole at night for about 3 years with no augmentation YET. I recently fell and fractured my back where discs are bulging. Entire spine riddled with arthritis and osteoporosis. Pain is crippling. To ease the pain, doctor wants me to add Gabapentin with the Ropinirole
Write4u
in
Restless Legs Syndrome
3 years ago
Update after BMB
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
Androg
in
MPN Voice
3 years ago
Taking Metavive ii to replace NatureThroid but...
I likely have
mast
cell
activation
syndrome
type issues. I only eat 5 foods. I have nasty gut flares. It's NOT IBS, food intolerances or just some tummy trouble. It is usually a rapid reaction to the 'wrong' foods, substances etc. MCAS is a type of immune disease involving mast cells.
I likely have
mast
cell
activation
syndrome
type issues. I only eat 5 foods. I have nasty gut flares. It's NOT IBS, food intolerances or just some tummy trouble. It is usually a rapid reaction to the 'wrong' foods, substances etc. MCAS is a type of immune disease involving mast cells.
sloco
in
Thyroid UK
4 years ago
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