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Gp review after b12 stopped
Hello 👋 I need some advice please. My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12
Hello 👋 I need some advice please. My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12
Twinklesthecat
in
Pernicious Anaemia Society
5 years ago
EMG & NERVE CONDUCTION STUDIES
Finally, after a year wait to see a Neurologist in July past (2019) I have been referred for EMGs and Nerve Conduction Studies as she noted severe muscle wasting from just below my calves on both legs. No muscle left round my ankles, very minimal left. So today I had the tests, plus some special ones
Finally, after a year wait to see a Neurologist in July past (2019) I have been referred for EMGs and Nerve Conduction Studies as she noted severe muscle wasting from just below my calves on both legs. No muscle left round my ankles, very minimal left. So today I had the tests, plus some special ones
LoolooLacey2
in
Charcot-Marie-Tooth UK
5 years ago
Numb Face
Has anyone experienced numbness in one side of their face? Before you say stroke I went through this several weeks ago, went to the emergency room & they called for a stroke alert. Next thing I was having a cat scan, & that's just the beginning. I ended up spending 11days in the hospital, most of them
Has anyone experienced numbness in one side of their face? Before you say stroke I went through this several weeks ago, went to the emergency room & they called for a stroke alert. Next thing I was having a cat scan, & that's just the beginning. I ended up spending 11days in the hospital, most of them
beachwine
in
Charcot-Marie-Tooth UK
5 years ago
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Parietal cell antibody test
I know I'm repeating myself but want to be clear. Is it correct that if you test negative for this it's reliable? I've not had the intrinsic factor test. I'm asking as I'm getting the vibe as one year in now the surgery want to decrease my B12 injections. B12 was put on my latest blood form after
I know I'm repeating myself but want to be clear. Is it correct that if you test negative for this it's reliable? I've not had the intrinsic factor test. I'm asking as I'm getting the vibe as one year in now the surgery want to decrease my B12 injections. B12 was put on my latest blood form after
Nackapan
in
Pernicious Anaemia Society
5 years ago
Help with who can diagnose now in perth so we can get the rigjt treatment we should of got two years ago instead of NOWHERE
Anyone Know How I Can Get Us all Diagnosed Fast 3 years round a bout and left with no treatment its depressing what 7 yr old has nil treatment and toe walked her whole life ?family all have cmt1c its we have late onset and its not hard to figure it out just by looking at our feet absent jerks t Slow
Anyone Know How I Can Get Us all Diagnosed Fast 3 years round a bout and left with no treatment its depressing what 7 yr old has nil treatment and toe walked her whole life ?family all have cmt1c its we have late onset and its not hard to figure it out just by looking at our feet absent jerks t Slow
Ally7411
in
Charcot-Marie-Tooth UK
5 years ago
Cmt2e ??
Rare Cmt 2e? Litaf gene I have a large family background of cmt1c They(first cousins) have alot of trouble coping and from a very early but my immediate family are different very late onset we have one by one now almost all of us are on insulin.Born with very ugly feet with deformitys but no real muscle
Rare Cmt 2e? Litaf gene I have a large family background of cmt1c They(first cousins) have alot of trouble coping and from a very early but my immediate family are different very late onset we have one by one now almost all of us are on insulin.Born with very ugly feet with deformitys but no real muscle
Ally7411
in
Charcot-Marie-Tooth UK
5 years ago
IF, H pylori, parietal cell antibody, vitamin b12 deficiency
Hi All, I am new to this group. I am miss diagnosed of not having any issues with various blood tests. I have PA diagnosed my self and cyanocobalamin and hydroxobalamin doesn’t work. Lot of neurological symptoms body shaking and what not. Only methycobalamin works and that too only from particular brand
Hi All, I am new to this group. I am miss diagnosed of not having any issues with various blood tests. I have PA diagnosed my self and cyanocobalamin and hydroxobalamin doesn’t work. Lot of neurological symptoms body shaking and what not. Only methycobalamin works and that too only from particular brand
Thulasi1
in
Pernicious Anaemia Society
5 years ago
Private B12 injections in London please?
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
GastritisB12
in
Pernicious Anaemia Society
5 years ago
Tandarts who needs advice
I have CMT 1(a). Was diagnosed in 1991, had two new knees , toes straightened etc . I would like to know if someone has leg and ankle braces and if so does it work. I don’t want anymore operations ie ankles to keep me on my feet and postpone a wheelchair. I’m 69 in June. Hate taking Lyrica for the peripheral
I have CMT 1(a). Was diagnosed in 1991, had two new knees , toes straightened etc . I would like to know if someone has leg and ankle braces and if so does it work. I don’t want anymore operations ie ankles to keep me on my feet and postpone a wheelchair. I’m 69 in June. Hate taking Lyrica for the peripheral
Tandarts
in
Charcot-Marie-Tooth UK
6 years ago
FURIOUS IS AN UNDERSTATEMENT!
I am still waiting to see a Neurologist, a Dermatologist for a Skin Biopsy, Pain Clinic and Human Genetics, I know these will take time as waiting lists are long where I live. However, I found out in June this year that my Hospital Records have been destroyed because I had not been admitted to or attended
I am still waiting to see a Neurologist, a Dermatologist for a Skin Biopsy, Pain Clinic and Human Genetics, I know these will take time as waiting lists are long where I live. However, I found out in June this year that my Hospital Records have been destroyed because I had not been admitted to or attended
LoolooLacey2
in
Charcot-Marie-Tooth UK
6 years ago
Advice if possible please
Hi all Sorry for the long post! I’ve posted a couple of times in the PA forum as have been having blood tests relating to low B12 as had a borderline serum result 192 (181-800) and range of symptoms pointing towards this - tingling and numbness in hands and feet, occasional tingling in head and back
Hi all Sorry for the long post! I’ve posted a couple of times in the PA forum as have been having blood tests relating to low B12 as had a borderline serum result 192 (181-800) and range of symptoms pointing towards this - tingling and numbness in hands and feet, occasional tingling in head and back
Scully12
in
Thyroid UK
6 years ago
Very poorly newbie - Desperate for help
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Flossles
in
Thyroid UK
6 years ago
PA when IFA and PCA test results are negative
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Sleepybunny
in
Pernicious Anaemia Society
6 years ago
UPDATE - MY REPLY TO MEMAMBE
Hi, I am waiting on referral and tests (I am 66 years old). I am just like you I am sore to touch all over. I have had many falls due to foot drop and if I do fall it is excrutiating if anyone tries to help me up, I have to crawl to a bit of furniture to get up. I also have Raynauds & Sjogrens Sydromes
Hi, I am waiting on referral and tests (I am 66 years old). I am just like you I am sore to touch all over. I have had many falls due to foot drop and if I do fall it is excrutiating if anyone tries to help me up, I have to crawl to a bit of furniture to get up. I also have Raynauds & Sjogrens Sydromes
LoolooLacey2
in
Charcot-Marie-Tooth UK
6 years ago
New here - advice needed please!
Hi, is a positive gastric parietal cell antibody test plus ongoing anaemia enough for a diagnosis of pernicious anaemia, even if serum B12 is in range?
Hi, is a positive gastric parietal cell antibody test plus ongoing anaemia enough for a diagnosis of pernicious anaemia, even if serum B12 is in range?
barton444
in
Pernicious Anaemia Society
6 years ago
Intrinsic Factor vs Parietal Cell Antibodies
If a person tested positive for the intrinsic factor antibody but negative to the parietal cell antibody, would that mean that the parietal cells in the stomach are not under attack, only the intrinsic factor that those cells produce? And would that mean that the stomach might be still producing acid
If a person tested positive for the intrinsic factor antibody but negative to the parietal cell antibody, would that mean that the parietal cells in the stomach are not under attack, only the intrinsic factor that those cells produce? And would that mean that the stomach might be still producing acid
topher2018
in
Pernicious Anaemia Society
6 years ago
Well got my results back and I guess this explains alot 🤦🏼♀️
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
JennaShi
in
Thyroid UK
6 years ago
Low b12, paretial antibodies negative, is it PA?
Hi all 👋🏼 Please bear with me, this is my first time posting. After a loooong time of feel tired beyond belief, low mood, gastro issues and irregular periods (is that a low b12 thing???) my dr tested my b12. My serum levels came back as 126 and my active b12 was 27. I’ve just finished the 6 loading
Hi all 👋🏼 Please bear with me, this is my first time posting. After a loooong time of feel tired beyond belief, low mood, gastro issues and irregular periods (is that a low b12 thing???) my dr tested my b12. My serum levels came back as 126 and my active b12 was 27. I’ve just finished the 6 loading
Emmy2018
in
Pernicious Anaemia Society
6 years ago
Socks for AFOs (available in the UK please)?
I have been wearing AFOs for a number of years now but still haven't solved the problem of what socks to wear. So far I have been wearing cheap short manmade fibre "diabetic socks" which leave most of the skin of my lower legs in contact with the plastic, and thick, cotton, "long diabetic socks" (about
I have been wearing AFOs for a number of years now but still haven't solved the problem of what socks to wear. So far I have been wearing cheap short manmade fibre "diabetic socks" which leave most of the skin of my lower legs in contact with the plastic, and thick, cotton, "long diabetic socks" (about
Amanita
in
Charcot-Marie-Tooth UK
6 years ago
Alice-Ann
Hi! I am 80 yrs. old widow living in Dallas, Texas, that has never acted her age. I Got my CMT from my Mother that presented itself when I was about 70. I take Gabapentin and Cymbalta for leg neuropathy. Have 2 new knees. Take Lazics twice daily for foot and leg swelling. Wear tying shoes as have
Hi! I am 80 yrs. old widow living in Dallas, Texas, that has never acted her age. I Got my CMT from my Mother that presented itself when I was about 70. I take Gabapentin and Cymbalta for leg neuropathy. Have 2 new knees. Take Lazics twice daily for foot and leg swelling. Wear tying shoes as have
Alice-Ann
in
Charcot-Marie-Tooth UK
6 years ago
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