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Doing the best with what we have
I've really enjoyed reading some of these posts written by people that deal with CMT and overcoming obstacles. You all are very courageous and I admire you all. It was a huge disappointment to be diagnosed with CMT when I was 11 years old but even worse when I lost my vision at the age of 12 and had
I've really enjoyed reading some of these posts written by people that deal with CMT and overcoming obstacles. You all are very courageous and I admire you all. It was a huge disappointment to be diagnosed with CMT when I was 11 years old but even worse when I lost my vision at the age of 12 and had
Samson360
in
Charcot-Marie-Tooth UK
3 years ago
Looking for advice
My son is 3 and his dad has cmt type 1a My son has all the signs like his dad just not the Pes cavus but his physio said kids don’t get a arch in the foot until 3-7 years old I don’t want leave it that long in cause my son does have it. Can I get a blood test done to see if he has it like his dad
My son is 3 and his dad has cmt type 1a My son has all the signs like his dad just not the Pes cavus but his physio said kids don’t get a arch in the foot until 3-7 years old I don’t want leave it that long in cause my son does have it. Can I get a blood test done to see if he has it like his dad
Carlyb4133
in
Charcot-Marie-Tooth UK
3 years ago
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
3 years ago
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B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
3 years ago
need exercise program after heart attack but disabled cant find a book on this.
hello I had a heart attack on the 10th July I am disabled in a wheelchair, I have the following arthritis in both knees, both knees need replacing, peripheral neuropathy, Both My feet have been badly deformed by neuropathic charcot, I also have copd, type 2 Diabeteas. I am looking for a book on
hello I had a heart attack on the 10th July I am disabled in a wheelchair, I have the following arthritis in both knees, both knees need replacing, peripheral neuropathy, Both My feet have been badly deformed by neuropathic charcot, I also have copd, type 2 Diabeteas. I am looking for a book on
microbar
in
Charcot-Marie-Tooth UK
3 years ago
Hi, is it possible to still have PA even though my parietal cell and intrinsic factor antibody are negative and my b12 is low?
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Rocky213
in
Pernicious Anaemia Society
3 years ago
Wall pellitory allergy cough
She gave me medicines:
Pariet
10mg (rabeprazole sodium), Singulair 10mg (montelukast), Oradus 5mg (desloratadine), Nasonex nasal spray (mometasone furoate), Sterimar nasal spray. My concern is that these are many thing to take and their side effects. Can anyone advise?
She gave me medicines:
Pariet
10mg (rabeprazole sodium), Singulair 10mg (montelukast), Oradus 5mg (desloratadine), Nasonex nasal spray (mometasone furoate), Sterimar nasal spray. My concern is that these are many thing to take and their side effects. Can anyone advise?
Santos82
in
Asthma Community Forum
4 years ago
weird test results
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
BumbleBeeBumble
in
Pernicious Anaemia Society
4 years ago
New and first post might not be related.. please excuse me.
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
b12pas
in
Pernicious Anaemia Society
4 years ago
anti parietal cell antibody test For b12
anti parietal cell antibody test For b12 is it worth ?
anti parietal cell antibody test For b12 is it worth ?
Ulrich-vi
in
Pernicious Anaemia Society
4 years ago
CMT carrier
I have genetic testing stating I am a CMT4j carrier. But I believe I have CMT symptoms. Typical high arches with 8 hammer toes. Peripheral neuropathy. Pain in hands, weak hands and respiratory issues. Is it possible to be a carrier WITH symptoms? My neuromuscular doctor says no.
I have genetic testing stating I am a CMT4j carrier. But I believe I have CMT symptoms. Typical high arches with 8 hammer toes. Peripheral neuropathy. Pain in hands, weak hands and respiratory issues. Is it possible to be a carrier WITH symptoms? My neuromuscular doctor says no.
Moonshadows
in
Charcot-Marie-Tooth UK
4 years ago
Omg how do some doctors get there degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Pernicious Anaemia Society
4 years ago
Omg how do some doctors get a degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Thyroid UK
4 years ago
Crunchy bones in neck, wrists and ankles since a teenaget. Anybody with charcot-marie-tooth disease had this ?
Hello my cousin has been diagnosed with CMT and called me as my brother and niece both suffer from hand tremours which the doc said can be a symptom. I have suffered since a teenager with pain and all i can describe as crunchy wrists, ankles and neck. it is very hard too describe and was told it was
Hello my cousin has been diagnosed with CMT and called me as my brother and niece both suffer from hand tremours which the doc said can be a symptom. I have suffered since a teenager with pain and all i can describe as crunchy wrists, ankles and neck. it is very hard too describe and was told it was
crunchiebones
in
Charcot-Marie-Tooth UK
4 years ago
Devastated to learn son may have CMT
Hi all, After many many months of trying to find out why my eldest handsome 16 year old son has developed scoliosis, muscle atrophy, losing weight and foot drop, a nerve conduction study and EMG revealed he has nerve damage in his arms and legs. Neurologist suspects hereditary poly neuropathy aka CMT
Hi all, After many many months of trying to find out why my eldest handsome 16 year old son has developed scoliosis, muscle atrophy, losing weight and foot drop, a nerve conduction study and EMG revealed he has nerve damage in his arms and legs. Neurologist suspects hereditary poly neuropathy aka CMT
KayJayTee
in
Charcot-Marie-Tooth UK
4 years ago
Do Nordic Walking Poles help for CMT drop foot?
I have the drop foot type CMT. The muscle on the top of my foot which is used to launch forward when you walk really does not work well any more. It is very tiring to walk because my legs have to do all the work. Has anyone with this same condition tried Nordic Walking Poles? And has it helped you
I have the drop foot type CMT. The muscle on the top of my foot which is used to launch forward when you walk really does not work well any more. It is very tiring to walk because my legs have to do all the work. Has anyone with this same condition tried Nordic Walking Poles? And has it helped you
TC43
in
Charcot-Marie-Tooth UK
4 years ago
Do I self treat now?
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hidden
in
Pernicious Anaemia Society
4 years ago
Functional doctor checking everything!
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
MariaMe
in
Pernicious Anaemia Society
4 years ago
Help with a mystery needed
In August I went went to a neurologist who tested my b12 levels because of neurological symptoms. I requested the test because in 2012 when I was trying to get pregnant a naturopathic dr found that my b12 levels were 350... at the time I had no symptoms. I remember her talking about intrinsic factor
In August I went went to a neurologist who tested my b12 levels because of neurological symptoms. I requested the test because in 2012 when I was trying to get pregnant a naturopathic dr found that my b12 levels were 350... at the time I had no symptoms. I remember her talking about intrinsic factor
CW12
in
Pernicious Anaemia Society
5 years ago
Frustrating
Frustrating I'm still waiting for my daughter and my Genetic test results after 12 months I am from a large cmt1c family and we have late onset ? MY daughter who is 7 has toe walked her entire life The rest of My family are taking insulin.pes cavus avd foot deformaties all of us have absent Achilles
Frustrating I'm still waiting for my daughter and my Genetic test results after 12 months I am from a large cmt1c family and we have late onset ? MY daughter who is 7 has toe walked her entire life The rest of My family are taking insulin.pes cavus avd foot deformaties all of us have absent Achilles
Ally7411
in
Charcot-Marie-Tooth UK
5 years ago
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