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Experiences with
Mast cell activation syndrome (MCAS)
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MDS
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Anemia related to bone marrow
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Little Embie on board! - what supplements to stop? / tips
Firstly thank you all so much for your responses yesterday!. Little embie now on board! Out of my 4 , i had one 5aa that has been put in. Two others that are close but not quite there yet to freeze ( they are letting me know tomorrow) my lining just made it at 6.5! Hopefully thick enough! I do have
Firstly thank you all so much for your responses yesterday!. Little embie now on board! Out of my 4 , i had one 5aa that has been put in. Two others that are close but not quite there yet to freeze ( they are letting me know tomorrow) my lining just made it at 6.5! Hopefully thick enough! I do have
kathgibson22
in
Fertility Network UK
4 years ago
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3 days with no Pramiperoxle, what now?
Could someone advise me how long it takes to withdraw from Pramiperoxile fully and finally. The last 3 days of no Pramiperoxle have been better/easier that I thought it would be but still get periods of being extremely uncomfortable with RLS symptoms. I am taking Cannabis oil two drops twice a day
Could someone advise me how long it takes to withdraw from Pramiperoxile fully and finally. The last 3 days of no Pramiperoxle have been better/easier that I thought it would be but still get periods of being extremely uncomfortable with RLS symptoms. I am taking Cannabis oil two drops twice a day
kelirock
in
Restless Legs Syndrome
4 years ago
Jill Brook, MA on the LDN Radio Show 8th April 2020
Her recent publications focus on SIBO, POTS and
Mast
Cell
Activation
Syndrome
. She serves as nutrition consultant to the Dysautonomia Clinic, which provides in-office, phone and video consults to patients with complex disorders worldwide. Jill Brook has dysautonomia and battles it with diet.
Her recent publications focus on SIBO, POTS and
Mast
Cell
Activation
Syndrome
. She serves as nutrition consultant to the Dysautonomia Clinic, which provides in-office, phone and video consults to patients with complex disorders worldwide. Jill Brook has dysautonomia and battles it with diet.
liveurlife
Volunteer
in
LDN Research Trust
4 years ago
Quitting Pramipexole
Has anybody successfully quit Pramipexole after being hooked to it for years? How? When I started Pramipexole (Mirapex) in 2011, with 0.125mg a day, I guess nobody knew yet about this Augmentation shit, and my doctor told me to just increase the dosage if the current dosage doesn't work anymore. Now
Has anybody successfully quit Pramipexole after being hooked to it for years? How? When I started Pramipexole (Mirapex) in 2011, with 0.125mg a day, I guess nobody knew yet about this Augmentation shit, and my doctor told me to just increase the dosage if the current dosage doesn't work anymore. Now
RestlessRR
in
Restless Legs Syndrome
4 years ago
Stem Cell Transplant
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
lebowski42
in
MPN Voice
4 years ago
Negative bloods
Hi I am new here and new to these symptoms of extremely dry mouth and dry eyes, I have weight loss and fatigue also. I recently had blood tests which came back negative. The doctors receptionist told me over the phone and no mention of needing to see the doctor again or have other tests....I have just
Hi I am new here and new to these symptoms of extremely dry mouth and dry eyes, I have weight loss and fatigue also. I recently had blood tests which came back negative. The doctors receptionist told me over the phone and no mention of needing to see the doctor again or have other tests....I have just
Pyxie
in
The Australian Sjögren's Syndrome Association
4 years ago
Day 31 in the ICU. I’m having a hard time trying to cope...
Again we spoke to the doctors and they are not rooting for my dad to make it. He is at 55% on the vent with peep of 10. We discussed if the next step would be the trach. But she also said that that may bring more problems to my Dad and it doesn’t guarantee that he will make it. She talked about considering
Again we spoke to the doctors and they are not rooting for my dad to make it. He is at 55% on the vent with peep of 10. We discussed if the next step would be the trach. But she also said that that may bring more problems to my Dad and it doesn’t guarantee that he will make it. She talked about considering
Garbagestar34
in
ICUsteps
4 years ago
Help with T3 Only Results
I have just received my results after being prescribed T3 only, as my Dr suspects conversion issues. It has been 1 month and I am taking 50mcg in the morning. I am still experiencing weight gain, low pulse, low temp. Thanks! --- TSH - 0.064 (0.27-4.2) T3 - 12.7 (3.1-6.8 T4 - 1.95 (12-22) TPA - 304 (<
I have just received my results after being prescribed T3 only, as my Dr suspects conversion issues. It has been 1 month and I am taking 50mcg in the morning. I am still experiencing weight gain, low pulse, low temp. Thanks! --- TSH - 0.064 (0.27-4.2) T3 - 12.7 (3.1-6.8 T4 - 1.95 (12-22) TPA - 304 (<
HarrietJW
in
Thyroid UK
4 years ago
Bariatric surgery and scleroderma
Has anyone with diffuse scleroderma had Bariatric surgery to help with reflux and weight loss?
Has anyone with diffuse scleroderma had Bariatric surgery to help with reflux and weight loss?
Steph
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
I’d be interested if this works for anyone else
I read that histamine intolerance can cause restless legs so I looked up foods with much histamine. I’ve cut out bananas, avocado, yoghourt, citrus fruits, tomatoes and spinach. After a few days my RLS disappeared. I am still taking my dopamine agonists but have not increased the dose as I was planning
I read that histamine intolerance can cause restless legs so I looked up foods with much histamine. I’ve cut out bananas, avocado, yoghourt, citrus fruits, tomatoes and spinach. After a few days my RLS disappeared. I am still taking my dopamine agonists but have not increased the dose as I was planning
LoisTonya
in
Restless Legs Syndrome
4 years ago
Flare-up not under control and just don't know what to do
Hi everyone Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg
Hi everyone Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg
EscapedtoWales
in
PMRGCAuk
4 years ago
An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
LemonZest11
in
PMRGCAuk
4 years ago
Aspartam!!!
For some months I've liked to drink Coke but always chose light to avoid calories. My RLS became an awful hell with severe pain. Now I stopped to drink it and am free of pain! I still have RLS and need Pramipexol at night but the hell of pain during the day is gone. Seems I'm very sensible to Aspartam
For some months I've liked to drink Coke but always chose light to avoid calories. My RLS became an awful hell with severe pain. Now I stopped to drink it and am free of pain! I still have RLS and need Pramipexol at night but the hell of pain during the day is gone. Seems I'm very sensible to Aspartam
silkyreg
in
Restless Legs Syndrome
4 years ago
Success with Suboxone?
Hi all - I’m new (posting) here. Thanks for being a community, I’ve read so many posts and found comfort from all of you!! Quick background - I have suffered with RLS at least 20 years - but probably my whole life. Started pramipexole .25 in 2000 and in 2018 was taking 2.75mg due to general lack of
Hi all - I’m new (posting) here. Thanks for being a community, I’ve read so many posts and found comfort from all of you!! Quick background - I have suffered with RLS at least 20 years - but probably my whole life. Started pramipexole .25 in 2000 and in 2018 was taking 2.75mg due to general lack of
erinjee
in
Restless Legs Syndrome
4 years ago
Flare?
Ridiculously tired and headaches, thought it was heatstroke but now my knees are throbbing and my hand joints hurt I’m thinking it’s a flare?! Anyone else get similar, only diagnosed in January..
Ridiculously tired and headaches, thought it was heatstroke but now my knees are throbbing and my hand joints hurt I’m thinking it’s a flare?! Anyone else get similar, only diagnosed in January..
LLH76
in
Fibromyalgia Action UK
4 years ago
Sjögren’s lip biopsy testing
Hi everyone, My GP and I think I may have Sjögren’s syndrome, but so far have been seronegative for antibody testing. I would like to pursue other forms of testing such as a lip or saliva gland biopsy, but have no idea who to see to organise this? I could travel to either Sydney or Melbourne if needed
Hi everyone, My GP and I think I may have Sjögren’s syndrome, but so far have been seronegative for antibody testing. I would like to pursue other forms of testing such as a lip or saliva gland biopsy, but have no idea who to see to organise this? I could travel to either Sydney or Melbourne if needed
Blue-eyes79
in
The Australian Sjögren's Syndrome Association
4 years ago
Living with Chronic Neuropathic Pain
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
Hidden
in
Pain Concern
4 years ago
Homeopathy meet after 2 years
Hi All, When I was diagnosed with PA in 2018 I was suffering a lot and met homeopathy. They claimed to cure PA in 3 years and made me to pay lot of amount upfront. I just believed them as I was going through a lot and nothing seems to give me relief as I was in early days of b12 injection treatment.
Hi All, When I was diagnosed with PA in 2018 I was suffering a lot and met homeopathy. They claimed to cure PA in 3 years and made me to pay lot of amount upfront. I just believed them as I was going through a lot and nothing seems to give me relief as I was in early days of b12 injection treatment.
Thulasi1
in
Pernicious Anaemia Society
4 years ago
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