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Multiple autoimmune conditions. Lupus too?
Where to start!I've been quite poorly with scleroderma, and I also have PBC, Sjogrens, and hypothyroidism. I have osteoarthritis and hyper flexibility joint syndrome. I am ACA pos, AMA pos, Igm pos, gastric parietal cell antibody positive, and I have just found out that I'm anti ro pos, and anti sm pos
Where to start!I've been quite poorly with scleroderma, and I also have PBC, Sjogrens, and hypothyroidism. I have osteoarthritis and hyper flexibility joint syndrome. I am ACA pos, AMA pos, Igm pos, gastric parietal cell antibody positive, and I have just found out that I'm anti ro pos, and anti sm pos
MissusTee
in
LUPUS UK
6 years ago
Blurred periphial vision with CMT....?
Hiya, I have CMT, Type 1a as well as my 3 children, my sister and my dad. Question: have any of you ever experienced periods of blurred vision in your periphial areas with both eyes? I have had 3 bouts of this periphial blurriness lasting approximately 15 minutes, then back to normal vision. I saw an
Hiya, I have CMT, Type 1a as well as my 3 children, my sister and my dad. Question: have any of you ever experienced periods of blurred vision in your periphial areas with both eyes? I have had 3 bouts of this periphial blurriness lasting approximately 15 minutes, then back to normal vision. I saw an
Cindyyb
in
Charcot-Marie-Tooth UK
6 years ago
New to CMT
After two years bouncing from 1doctor/specialist my primary care doctor sent me to the University of Florida. There a wonderful neurologist quickly diagnosed me with CMT. That was my beginning of knowing what I was dealing with. I have been bed-ridden for over 2 years using a walker or wheel chair. A
After two years bouncing from 1doctor/specialist my primary care doctor sent me to the University of Florida. There a wonderful neurologist quickly diagnosed me with CMT. That was my beginning of knowing what I was dealing with. I have been bed-ridden for over 2 years using a walker or wheel chair. A
beachwine
in
Charcot-Marie-Tooth UK
6 years ago
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High Homocysteine levels
Hello Mine is a bit of a long story so hope this is ok. I am 58 I had my gallbladder out in 2013 before that I thought I was eating not to bad but obviously I wasn’t. I had lots of gallstones, I got pancaraties and that’s how I knew I had a problem with gallstones. Anyway I got diagnosed with fibromyalgia
Hello Mine is a bit of a long story so hope this is ok. I am 58 I had my gallbladder out in 2013 before that I thought I was eating not to bad but obviously I wasn’t. I had lots of gallstones, I got pancaraties and that’s how I knew I had a problem with gallstones. Anyway I got diagnosed with fibromyalgia
Jan87
in
Pernicious Anaemia Society
7 years ago
Confused
Hi all , I'm completely confused I was diagnosed with Cmt last year . I am 57 years old and spent so many years being told I was clumsy and falling over, I was sent to an array of different doctors to the point I was beginning to think the symptoms I had was in my head, anyway to cut a long story short
Hi all , I'm completely confused I was diagnosed with Cmt last year . I am 57 years old and spent so many years being told I was clumsy and falling over, I was sent to an array of different doctors to the point I was beginning to think the symptoms I had was in my head, anyway to cut a long story short
Pixieboothman
in
Charcot-Marie-Tooth UK
6 years ago
B12 deficient steak lover
HI everyone, I am new here. I am a 27yr old female in the UK. Recently, I went to my GP with what I thought were Hypothyroid symptoms on my Mother's advice since she has this condition. I was shocked to learn that my thyroid was fine (given a family history of thyroid problems) but found that I had
HI everyone, I am new here. I am a 27yr old female in the UK. Recently, I went to my GP with what I thought were Hypothyroid symptoms on my Mother's advice since she has this condition. I was shocked to learn that my thyroid was fine (given a family history of thyroid problems) but found that I had
TMur1990
in
Pernicious Anaemia Society
7 years ago
Peripheral Neuropathy pain
I was diagnosed 1991 with CMT type 1(a) I am 67 now and had my knees replaced , my toes staightened etc etc. I get periferal neuropathy pains on just one toe. It last for 3_4 days and by using the T.E.N.S machine it allows me to get some sleep. Is there anything out there that would be helpful ? I walk
I was diagnosed 1991 with CMT type 1(a) I am 67 now and had my knees replaced , my toes staightened etc etc. I get periferal neuropathy pains on just one toe. It last for 3_4 days and by using the T.E.N.S machine it allows me to get some sleep. Is there anything out there that would be helpful ? I walk
Tandarts
in
Charcot-Marie-Tooth UK
7 years ago
Not known i had CMT for many years
I think i must have had cmt since childhood i was always wobbly walking in my teens i sure people use to think i was drunk, friends remark chucks been drinking. I use to say to my Doctor but nothing ever happened. About 4 yrs ago i went to a Doctor not for the cmt walked into the surgery & she remarked
I think i must have had cmt since childhood i was always wobbly walking in my teens i sure people use to think i was drunk, friends remark chucks been drinking. I use to say to my Doctor but nothing ever happened. About 4 yrs ago i went to a Doctor not for the cmt walked into the surgery & she remarked
chuckles333
in
Charcot-Marie-Tooth UK
7 years ago
CMD
Hello all I suspect I may have CMT? I'm waiting for a neurology test, its taken from March to get this far but the test is still late January. I have felt from May last year my muscles are wasting away? I built a log cabin garage in 2016 on my own but now find it difficult to lift things much lighter
Hello all I suspect I may have CMT? I'm waiting for a neurology test, its taken from March to get this far but the test is still late January. I have felt from May last year my muscles are wasting away? I built a log cabin garage in 2016 on my own but now find it difficult to lift things much lighter
djl45
in
Charcot-Marie-Tooth UK
7 years ago
ESA Medical Assessment
Hi, My name is Jenny and I have CMT1 and for the last 4 months I have been signed off with stress and anxiety which pushed me to hand in my notice at work.I have been claiming ESA due to advice from my GP and also Citizens Advice. Tomorrow I have a Medical Assessment appointment to go to and frankly
Hi, My name is Jenny and I have CMT1 and for the last 4 months I have been signed off with stress and anxiety which pushed me to hand in my notice at work.I have been claiming ESA due to advice from my GP and also Citizens Advice. Tomorrow I have a Medical Assessment appointment to go to and frankly
Jeffer123
in
Charcot-Marie-Tooth UK
7 years ago
More Advice Needed Please re low B12 now & 10 years ago
Hi all, I've been back to the docs again today (my 2nd home at the mo!!) where I saw a more sympathetic GP. On filling her in on my previous visits she told me that as well as my ferritin being low last March (when I was pregnant and started on iron tablets) my b12 was low 10 years ago when they tested
Hi all, I've been back to the docs again today (my 2nd home at the mo!!) where I saw a more sympathetic GP. On filling her in on my previous visits she told me that as well as my ferritin being low last March (when I was pregnant and started on iron tablets) my b12 was low 10 years ago when they tested
Eoperez
in
Pernicious Anaemia Society
7 years ago
plantar atrophy
for quit some time i have had very bad pain in my bottom of my foot at the back of my foot i have felt my foot on the bottom at the back and it feels like there is no padding there saw my doctor told i have plantar atrophy it is very painfull .any one else have this please ,
for quit some time i have had very bad pain in my bottom of my foot at the back of my foot i have felt my foot on the bottom at the back and it feels like there is no padding there saw my doctor told i have plantar atrophy it is very painfull .any one else have this please ,
mason
in
Charcot-Marie-Tooth UK
7 years ago
How safe are heartburn medications and who should use them?
[/i] [i]Proton pump inhibitors (known in Australia by names such as Nexium,
Pariet
, Losec, Somac and Zoton) work by preventing key pumps in the cells of the stomach that produce stomach acid from working.
[/i] [i]Proton pump inhibitors (known in Australia by names such as Nexium,
Pariet
, Losec, Somac and Zoton) work by preventing key pumps in the cells of the stomach that produce stomach acid from working.
AussieNeil
Partner
in
CLL Support
7 years ago
JOINT PROBLEMS and CMT
I have had CMT for most of my adult life but was only diagnosed when I was in my late 40's. I am now 64. Doctors in South Africa don't seem to know much about this disease. All my joints seem to have been affected and I was wondering if there is anyone who has a similar problem. I had a total hip
I have had CMT for most of my adult life but was only diagnosed when I was in my late 40's. I am now 64. Doctors in South Africa don't seem to know much about this disease. All my joints seem to have been affected and I was wondering if there is anyone who has a similar problem. I had a total hip
Marlenesmith
in
Charcot-Marie-Tooth UK
7 years ago
GP didn't order intrinsic factor test!
Hello, I went to my GP practice and got print-outs of all my blood test results, but discovered I never even had the IF test! Instead she did the gastric parietal cell antibody test (negative) as well as a number of others (all negative): Anti Mitochondrial Antibody Anti Smooth Muscle Antibody Liver
Hello, I went to my GP practice and got print-outs of all my blood test results, but discovered I never even had the IF test! Instead she did the gastric parietal cell antibody test (negative) as well as a number of others (all negative): Anti Mitochondrial Antibody Anti Smooth Muscle Antibody Liver
Curlygal
in
Pernicious Anaemia Society
7 years ago
IF Antibody test back - so what next
Following up on my previous posts (low B12, started on B12 loading shots - had second today so too early to tell results on symptoms) Finally got my IF antibody test back today Results: 2.9 U/mL (Normal: < 6 U/mL) I'm aware of the inherent reliability of the test (40-60%) so realise that it doesn't
Following up on my previous posts (low B12, started on B12 loading shots - had second today so too early to tell results on symptoms) Finally got my IF antibody test back today Results: 2.9 U/mL (Normal: < 6 U/mL) I'm aware of the inherent reliability of the test (40-60%) so realise that it doesn't
GavinUK
in
Pernicious Anaemia Society
7 years ago
Throat clearing !
Hi, can anyone advise me, my husband who has CMT diagnosed three months ago after EMG and blood tests, still waiting for DNA results ! and originally misdiagnosed with MND, he is constantly clearing his throat, this has gone on for some weeks now, it is interfering with his sleep, normally a good
Hi, can anyone advise me, my husband who has CMT diagnosed three months ago after EMG and blood tests, still waiting for DNA results ! and originally misdiagnosed with MND, he is constantly clearing his throat, this has gone on for some weeks now, it is interfering with his sleep, normally a good
Hidden
in
Charcot-Marie-Tooth UK
7 years ago
Is this the right test?
I've been diagnosed with B12 (113) and folate (3.1) deficiency. I'm getting the loading injections at the moment. The doctor has given me a blood test form to get a "gastic parietal cell antibody" test. Is this the right test? I thought I should be getting the Anti intrinsic factor antibody test as that
I've been diagnosed with B12 (113) and folate (3.1) deficiency. I'm getting the loading injections at the moment. The doctor has given me a blood test form to get a "gastic parietal cell antibody" test. Is this the right test? I thought I should be getting the Anti intrinsic factor antibody test as that
Orpheusss
in
Pernicious Anaemia Society
7 years ago
Breathing and cmt
Hi was just wondering if my cmt causes shortness of breath as ive just been given a blue easy breath inhaler. Ive been getting out of breath alot and my gp has given me a inhaler which ive only had a few days but is helping me . Gotta go back and gotta have a chest xray although will they find anything
Hi was just wondering if my cmt causes shortness of breath as ive just been given a blue easy breath inhaler. Ive been getting out of breath alot and my gp has given me a inhaler which ive only had a few days but is helping me . Gotta go back and gotta have a chest xray although will they find anything
Juliej51
in
Charcot-Marie-Tooth UK
7 years ago
Diagnosing CMT in children?
Hiya, I'm new here just looking for some advice and help with a few things :) Bit of background, I have two children, ages 4 and 9, whose father has CMT (runs in the family he has it along with his brother, mother and I think one of his grandparents) My youngest son was recently refered to the hospital
Hiya, I'm new here just looking for some advice and help with a few things :) Bit of background, I have two children, ages 4 and 9, whose father has CMT (runs in the family he has it along with his brother, mother and I think one of his grandparents) My youngest son was recently refered to the hospital
MummyofThreex
in
Charcot-Marie-Tooth UK
7 years ago
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