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Referral to Guys/St Thomas's
had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being lowered as a result. I was advised that my blood sample appointments would be now extended to once a month sampling. I disputed this, as I am
had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being lowered as a result. I was advised that my blood sample appointments would be now extended to once a month sampling. I disputed this, as I am
Micky1956
in
MPN Voice
2 months ago
Cardiac Cath this Friday
I last updated about my new dx of POTS. Since I seem to be a “difficult” case, my cardiologist wants to do a heart cath this Friday. I have not had any chest pain but the shortness of breath is adversely affecting daily. I have had all the pulmonary tests, CT’s and functional tests. I have the lungs
I last updated about my new dx of POTS. Since I seem to be a “difficult” case, my cardiologist wants to do a heart cath this Friday. I have not had any chest pain but the shortness of breath is adversely affecting daily. I have had all the pulmonary tests, CT’s and functional tests. I have the lungs
Wewo01
in
MPN Voice
2 months ago
Fibre supplement.
Hi. Please can anyone recommend a good fibre supplement? I know I don't have enough fibre in my restricted diet which doesn't help with my constipation. I take 2 magnesium citrate tablets every night but even these don't help as they did when I first took them about 2 years ago. I know all the
Hi. Please can anyone recommend a good fibre supplement? I know I don't have enough fibre in my restricted diet which doesn't help with my constipation. I take 2 magnesium citrate tablets every night but even these don't help as they did when I first took them about 2 years ago. I know all the
Moggiedee
in
IBS Network
2 months ago
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Urgent advice needed re return of symptoms
Just this minute back from Italy (3.40am) a very stressful and sad trip (not a holiday). Temperatures were 39 degrees C, extreme weather warning was issued, difficult to cope but managed to get respite from Air Con at hotel and hospital. Last 2 days I have had diarrhea (from something I ate, does not
Just this minute back from Italy (3.40am) a very stressful and sad trip (not a holiday). Temperatures were 39 degrees C, extreme weather warning was issued, difficult to cope but managed to get respite from Air Con at hotel and hospital. Last 2 days I have had diarrhea (from something I ate, does not
Fatsiajaponica
in
PMRGCAuk
2 months ago
Schwannomatosis or Neurofibromatosis Type 3 later symptoms!
I have had this very rare neurological type condition since the age of 14, I am now aged 68, finally diagnosed in 2017, whereby schwannomas/benign tumours form on the nerve canals of the body, hand, legs, and torso, not as yet known as on the head, although I have Juvenile Myoclonic Epilepsy also since
I have had this very rare neurological type condition since the age of 14, I am now aged 68, finally diagnosed in 2017, whereby schwannomas/benign tumours form on the nerve canals of the body, hand, legs, and torso, not as yet known as on the head, although I have Juvenile Myoclonic Epilepsy also since
Adlon57
in
Healthy Evidence
2 months ago
Diarrhoea Newly Diagnosed PMR
I was diagnosed with PMR 4 weeks ago and commenced prednisalone 15mg which has been very effective. I started having acute diarrhoea 12 days ago that won’t go away and was wondering if anyone else has had a similar experience? Poo samples are negative to infection, loperamide is not working and despite
I was diagnosed with PMR 4 weeks ago and commenced prednisalone 15mg which has been very effective. I started having acute diarrhoea 12 days ago that won’t go away and was wondering if anyone else has had a similar experience? Poo samples are negative to infection, loperamide is not working and despite
Classicalgeeze
in
PMRGCAuk
2 months ago
What you can do.
HI 1 make a tool box to hold your information. Buy a big book called Fibromyalgia & Chronic Myofascial Pain Syndrome a survival manual Devin Starlanyl M.D. Mary Ellen Copeland, M. S.,M.A This book will help you. Oh by the way the tool box you make is in the mind. I live in the US the last
HI 1 make a tool box to hold your information. Buy a big book called Fibromyalgia & Chronic Myofascial Pain Syndrome a survival manual Devin Starlanyl M.D. Mary Ellen Copeland, M. S.,M.A This book will help you. Oh by the way the tool box you make is in the mind. I live in the US the last
dellydog
in
Fibromyalgia Action UK
2 months ago
Adenmyosis and Constipation
I found out recently that adenmyosis can cause bad bouts of constipation, which explains a lot for me. However all the dr’s do is plug me with laxitives and tell me to eat prunes (which I have explained doesn’t help) because (and I apologise if this is TMI) my stools aren’t hard, it’s not a fibre intake
I found out recently that adenmyosis can cause bad bouts of constipation, which explains a lot for me. However all the dr’s do is plug me with laxitives and tell me to eat prunes (which I have explained doesn’t help) because (and I apologise if this is TMI) my stools aren’t hard, it’s not a fibre intake
SmallTalk
in
Endometriosis UK
2 months ago
Enzalutamide
Hi I take 30mg Targinact and 300mg Gabapentin for severe RLS I'm also taking quarterly Prostap injections to prevent the spread of prostate cancer. I was also taking 400mg Enzalutamide daily. I was experience serious daytime sleepiness and brain fog, so the oncologist stopped the Enzalutamide for 6
Hi I take 30mg Targinact and 300mg Gabapentin for severe RLS I'm also taking quarterly Prostap injections to prevent the spread of prostate cancer. I was also taking 400mg Enzalutamide daily. I was experience serious daytime sleepiness and brain fog, so the oncologist stopped the Enzalutamide for 6
RLSHell
in
Restless Legs Syndrome
2 months ago
Psyllium Husk
Hi, had another flare up yesterday, after being reasonably ok for the last 3 weeks = I've really cleaned up my diet and yesterday was the result of a day out with friends, tea and cake and a slice of quiche. So difficult to find anything I actually enjoy eating at home, let alone at a restaurant.
Hi, had another flare up yesterday, after being reasonably ok for the last 3 weeks = I've really cleaned up my diet and yesterday was the result of a day out with friends, tea and cake and a slice of quiche. So difficult to find anything I actually enjoy eating at home, let alone at a restaurant.
Letsfixit1
in
IBS Network
2 months ago
Critical illness neuropathy and critical illness myopathy
Are there any members of this group who are aware of anyone being placed into an induced coma with pneumonia and whilst in the coma suffered kidney issues and were placed on dialysis and then came off it. Has anyone knowledge of anyone coming out of an induced coma and being unable to speak or move
Are there any members of this group who are aware of anyone being placed into an induced coma with pneumonia and whilst in the coma suffered kidney issues and were placed on dialysis and then came off it. Has anyone knowledge of anyone coming out of an induced coma and being unable to speak or move
Twoblu
in
ICUsteps
2 months ago
it’s back again.
A couple of years ago after seeing a nutritionist I went gluten and dairy free and all my symptoms went away and I was so happy. Then a few months ago my symptoms returned I’m getting bad urgency and incomplete evacuation and sharp tummy pains. I saw the doctor who gave me a fit test which came back
A couple of years ago after seeing a nutritionist I went gluten and dairy free and all my symptoms went away and I was so happy. Then a few months ago my symptoms returned I’m getting bad urgency and incomplete evacuation and sharp tummy pains. I saw the doctor who gave me a fit test which came back
JanetJAM
in
IBS Network
3 months ago
Feeling positive. Alflorex v Gut Powered
Hi all, first of all thanks for the suggestions to my first post, I realise that I am actually very lucky compared to the trauma some of you are experiencing, its so easy to feel alone in dealing with this. I am now feeling much more positive. Some of you recommended Alforex, so today I visited Holland
Hi all, first of all thanks for the suggestions to my first post, I realise that I am actually very lucky compared to the trauma some of you are experiencing, its so easy to feel alone in dealing with this. I am now feeling much more positive. Some of you recommended Alforex, so today I visited Holland
Letsfixit1
in
IBS Network
3 months ago
Stuck at 4.5mg
Have been on 4.5 mg since last November. Saw hip surgeon in January who told me to stay on 4.5mg rather than risk a flare before my surgery for hip replacement which took place in March. After my op I was in a lot of pain (from the surgery) with a prolonged recovery so even though my GP told me to try
Have been on 4.5 mg since last November. Saw hip surgeon in January who told me to stay on 4.5mg rather than risk a flare before my surgery for hip replacement which took place in March. After my op I was in a lot of pain (from the surgery) with a prolonged recovery so even though my GP told me to try
jaycee444
in
PMRGCAuk
3 months ago
Ibs 40 years wipeout yesterday . I've been taking imodium for nearly 4 years after having Covid 3 times. Tried Buscopan instead of imodium
Hi since trying buscapan for 2 weeks I have in last few days woken up with explosive diarrhoea overflow. I decided last Monday I would not take imodium but yesterday was shocking 11 trips to loo with runs. Drank 2 liters of water to keep hydrated I'm nearly 76 feel week. Kidney Disease. Rehydration
Hi since trying buscapan for 2 weeks I have in last few days woken up with explosive diarrhoea overflow. I decided last Monday I would not take imodium but yesterday was shocking 11 trips to loo with runs. Drank 2 liters of water to keep hydrated I'm nearly 76 feel week. Kidney Disease. Rehydration
Angelsong2020
in
IBS Network
3 months ago
Cetrotide panic - blood on withdrawal of needle
Hi,I'm in a bit of a panic as I had quite a big blob of blood when withdrawing needle after injecting cetrotide today. Typically it's Sunday and clinic is closed so I can't ring anyone for advice. I saw the entire dose go into my stomach and know I probably nicked a capillary in the way out, but I'm
Hi,I'm in a bit of a panic as I had quite a big blob of blood when withdrawing needle after injecting cetrotide today. Typically it's Sunday and clinic is closed so I can't ring anyone for advice. I saw the entire dose go into my stomach and know I probably nicked a capillary in the way out, but I'm
Minniemouse88
in
Fertility Network UK
3 months ago
Reaching out to other sufferers
Hi, first time here. I'm feeling disheartened that despite all my efforts, my IBSd is getting no better. And I'm baffled as to what to do next. I've recently been diagnosed with osteoporosis despite having an active and healthy lifestyle and I suspect this may have been caused by restrictive diets. In
Hi, first time here. I'm feeling disheartened that despite all my efforts, my IBSd is getting no better. And I'm baffled as to what to do next. I've recently been diagnosed with osteoporosis despite having an active and healthy lifestyle and I suspect this may have been caused by restrictive diets. In
Letsfixit1
in
IBS Network
3 months ago
Reduced JAK2 allele burden
I see so many posts where people discuss reduction in JAK2 allele burden. In particular how certain medications are responsible for that reduction. I know there has been a lot of discussion regarding the significance of a reduction. My question is, has there been any consensus among the world renowned
I see so many posts where people discuss reduction in JAK2 allele burden. In particular how certain medications are responsible for that reduction. I know there has been a lot of discussion regarding the significance of a reduction. My question is, has there been any consensus among the world renowned
LIGEBA
in
MPN Voice
3 months ago
Rasagiline
my partner has just been prescribed rasagiline to help with sleep and stiffness she is not on any other medications - done if the side effects look grim - anyone out there tried this? Abd what was your experience thanks ( she had had tremor 2 years internal tremor stopping sleep and soreness in upper
my partner has just been prescribed rasagiline to help with sleep and stiffness she is not on any other medications - done if the side effects look grim - anyone out there tried this? Abd what was your experience thanks ( she had had tremor 2 years internal tremor stopping sleep and soreness in upper
Biscuit61
in
Cure Parkinson's
3 months ago
Colonoscopy
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Babciboys
in
PMRGCAuk
3 months ago
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