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Assistive devices for CMT
Hi people, Anybody use any special tools to compensate for the neuropathy? I carry a needle nosed pliers on my keychain, and in the glove compartment of my car, in order to use credit cards at the ATM. Also a "neuropathy" button hooker---a wire loop on a plastic handle, purchased from WalMart online
Hi people, Anybody use any special tools to compensate for the neuropathy? I carry a needle nosed pliers on my keychain, and in the glove compartment of my car, in order to use credit cards at the ATM. Also a "neuropathy" button hooker---a wire loop on a plastic handle, purchased from WalMart online
jimkline1948
in
Charcot-Marie-Tooth UK
9 years ago
Post-Polio Syndrome v Charcot-Marie Tooth
I am struck by the number of times people with CMT mention other health issues...which reflect my own experiences. I suspect that most CMTites have a packages of health problems to deal with and it makes me wonder if there is a causal link between some of them. I will list a few of mine in a moment.
I am struck by the number of times people with CMT mention other health issues...which reflect my own experiences. I suspect that most CMTites have a packages of health problems to deal with and it makes me wonder if there is a causal link between some of them. I will list a few of mine in a moment.
Forester
in
Charcot-Marie-Tooth UK
9 years ago
CMT-TENS/EMS...any suggestions?
Hello CMTites, I have just written to Tenscare UK, who make the Tens machine I have used for pain relief for several years now, asking their advice on my current CMT difficulty which is numb ankles with loss of sensitivity. They are hesitant to make a definitive statement because - surprise surprise
Hello CMTites, I have just written to Tenscare UK, who make the Tens machine I have used for pain relief for several years now, asking their advice on my current CMT difficulty which is numb ankles with loss of sensitivity. They are hesitant to make a definitive statement because - surprise surprise
Forester
in
Charcot-Marie-Tooth UK
9 years ago
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Pereferal neuropathic pain ( CMT type 1(a) )
Can anybody with similar problems tell me if one has to keep on taking 300mg Lyrica (pregabalin ) to stop the neuropathic pain attacks ? I get it on one toe only ? Lyrica makes me drunk and sleepy which is not good when you are only 65 yrs old and still drives.
Can anybody with similar problems tell me if one has to keep on taking 300mg Lyrica (pregabalin ) to stop the neuropathic pain attacks ? I get it on one toe only ? Lyrica makes me drunk and sleepy which is not good when you are only 65 yrs old and still drives.
Tandarts
in
Charcot-Marie-Tooth UK
9 years ago
CMT & Hip Replacement
Eleven days to go to get a new hip, I have Type 1A CMT, 64 years old, overweight, My balance is poor and was wondering if anyone on here has gone through this ? How did you cope, how easy could you manage stairs after, how long did it take to be able to drive again. I know we are all different but some
Eleven days to go to get a new hip, I have Type 1A CMT, 64 years old, overweight, My balance is poor and was wondering if anyone on here has gone through this ? How did you cope, how easy could you manage stairs after, how long did it take to be able to drive again. I know we are all different but some
Hidden
in
Charcot-Marie-Tooth UK
9 years ago
CMT type 2N
Hello, I'm a 45yr old English woman living in Sweden. I found out last spring that I had CMT. It was a chock and reading up on the illness made it even more difficult to deal with. I live here with my 13 yr old son. I have no other family here and the friends I have 'don't do sicknesses,' .........their
Hello, I'm a 45yr old English woman living in Sweden. I found out last spring that I had CMT. It was a chock and reading up on the illness made it even more difficult to deal with. I live here with my 13 yr old son. I have no other family here and the friends I have 'don't do sicknesses,' .........their
Wurzelone
in
Charcot-Marie-Tooth UK
9 years ago
Vitamin D!
Hi I have HNPP and diabetes and now I have had a letter from my GP to go see the nurse regarding my vitamin D levels!! They won't tell me if they are up/down, I have to wait now til Wedensday when I go see the nurse. The thing I would like to ask anyone out there is...... Can HNPP or Diabetes cause any
Hi I have HNPP and diabetes and now I have had a letter from my GP to go see the nurse regarding my vitamin D levels!! They won't tell me if they are up/down, I have to wait now til Wedensday when I go see the nurse. The thing I would like to ask anyone out there is...... Can HNPP or Diabetes cause any
Pam49
in
Charcot-Marie-Tooth UK
9 years ago
Positive parietal cell antibody
After eventually seeing a neurologist with regard to my tingling limbs, I have today received a copy of a letter he sent to my GP. He says that the MRI scan was normal, so pleased about that. However, he then says, quote: "I note she as a positive parietal cell antibody and that some provisional blood
After eventually seeing a neurologist with regard to my tingling limbs, I have today received a copy of a letter he sent to my GP. He says that the MRI scan was normal, so pleased about that. However, he then says, quote: "I note she as a positive parietal cell antibody and that some provisional blood
Twitchen
in
Thyroid UK
9 years ago
Progress
I joined the PAS and this forum at the beginning of Sept this year having been diagnosed with PA in May 2013. I hadn't received any loading doses and was put immediately onto 3 monthly injections. My readings on each subsequent visit to the Doc were around the 200 mark. Thanks to the forum I realised
I joined the PAS and this forum at the beginning of Sept this year having been diagnosed with PA in May 2013. I hadn't received any loading doses and was put immediately onto 3 monthly injections. My readings on each subsequent visit to the Doc were around the 200 mark. Thanks to the forum I realised
Weewull
in
Pernicious Anaemia Society
10 years ago
Is there a better test for F1 antibodies?
Hi, I've been (blood) tested for F1 antibodies and the results were negative, but I've heard the test is notoriously unreliable - does anyone know of a better test that I could request or is the standard blood test the only one out there? I'm going to ask for a parietal cell antibody test, and possibly
Hi, I've been (blood) tested for F1 antibodies and the results were negative, but I've heard the test is notoriously unreliable - does anyone know of a better test that I could request or is the standard blood test the only one out there? I'm going to ask for a parietal cell antibody test, and possibly
Chancery
in
Pernicious Anaemia Society
10 years ago
Help with test results please
Hi I have finally got my test results from my GP. I was wondering if anyone could look at them and let me know what they think please. Sorry but have added everything as not sure what I could miss out. I cannot find my original B12 result as not sure what I am reading but know at the time I was
Hi I have finally got my test results from my GP. I was wondering if anyone could look at them and let me know what they think please. Sorry but have added everything as not sure what I could miss out. I cannot find my original B12 result as not sure what I am reading but know at the time I was
lal2502
in
Pernicious Anaemia Society
10 years ago
A toe-curling problem
I have just reached the stage where my toes have curled under to the extent that my weight is on the ends of some of them, rather than the pads. It can be jolly painful. For many years it has been very difficult to slide my feet into shoes unless the inside is extremely smooth, as the toes catch on
I have just reached the stage where my toes have curled under to the extent that my weight is on the ends of some of them, rather than the pads. It can be jolly painful. For many years it has been very difficult to slide my feet into shoes unless the inside is extremely smooth, as the toes catch on
Amanita
in
Charcot-Marie-Tooth UK
10 years ago
OH NOES! Have I ruined my chances for parietal cell antibody testing?
For reasons that are too embarrassing to explain, I suspect I might have something wrong with my parietal cells. I've had the full blood tests, plus B12 serum, folate, and IF antibody tests - all 'normal' (i.e. B12 in the 'grey zone'), but I wasn't tested for Parietal Cell Antibody. Would anything have
For reasons that are too embarrassing to explain, I suspect I might have something wrong with my parietal cells. I've had the full blood tests, plus B12 serum, folate, and IF antibody tests - all 'normal' (i.e. B12 in the 'grey zone'), but I wasn't tested for Parietal Cell Antibody. Would anything have
Chancery
in
Pernicious Anaemia Society
10 years ago
What to do next
My teenage relative was given six loading doses of B12 after their level tested at 136. Iron levels were low normal folate normal blood count etc normal. Three months after loading doses b12 levels were 288. Intrinsic factor anti body was not tested for as Gastric Parietal Cell antibody was negative
My teenage relative was given six loading doses of B12 after their level tested at 136. Iron levels were low normal folate normal blood count etc normal. Three months after loading doses b12 levels were 288. Intrinsic factor anti body was not tested for as Gastric Parietal Cell antibody was negative
Hensa
in
Pernicious Anaemia Society
10 years ago
Neurologist saying B12 is a 'red herring' - what should I do? :/
Sorry if this seems a bit too much repeated info on my case, but wanted to include some past info, so I could ask an opinion on the problem I have .... In march I started to experience strong numbness and tingling in my left hand to the point it was hard to feel things - (have had multiple occurrences
Sorry if this seems a bit too much repeated info on my case, but wanted to include some past info, so I could ask an opinion on the problem I have .... In march I started to experience strong numbness and tingling in my left hand to the point it was hard to feel things - (have had multiple occurrences
laurabeebee
in
Pernicious Anaemia Society
10 years ago
Am I just just b12 deficient or PA? So confused what to do next :(
Can anyone help me please, I am so confused as what to do next.... Over the years I have had periods of numbness, pins and needles in my hands and feet, tiredness, mind fog etc which drs tests usually brought down to iron/folate deficiency. However this time was the worst it's been. In march I started
Can anyone help me please, I am so confused as what to do next.... Over the years I have had periods of numbness, pins and needles in my hands and feet, tiredness, mind fog etc which drs tests usually brought down to iron/folate deficiency. However this time was the worst it's been. In march I started
laurabeebee
in
Pernicious Anaemia Society
10 years ago
is this a type of Charcot-Marie-Tooth disease
hi i.m 49 years old i.m from Syria from 10 years ago my doctor tell me that i have neuropathy disease when he treat me from back pain and diagnose may be chacot-marie-tooth disease symptoms are : 1- I could not stand up on my toes 2- I could not stand up on my heels 3- the first (big) left toe
hi i.m 49 years old i.m from Syria from 10 years ago my doctor tell me that i have neuropathy disease when he treat me from back pain and diagnose may be chacot-marie-tooth disease symptoms are : 1- I could not stand up on my toes 2- I could not stand up on my heels 3- the first (big) left toe
bawadry
in
Charcot-Marie-Tooth UK
11 years ago
Some red spot in my upper mouth and coming blood after getting b12 injection
Hi, fabruary 2012 my doctor found some erosion in my duodenum, he gives me treepol therapy, ant ppi, but I filling burning in my stomach, then doctor see my b12 label it was 135, iron was 40, doctor give me b12 supplement, and iron supplement, but no major improvement, then doctor check b12 label
Hi, fabruary 2012 my doctor found some erosion in my duodenum, he gives me treepol therapy, ant ppi, but I filling burning in my stomach, then doctor see my b12 label it was 135, iron was 40, doctor give me b12 supplement, and iron supplement, but no major improvement, then doctor check b12 label
npno
in
Pernicious Anaemia Society
11 years ago
Hnpp and cmt
Hi I hope that this is the right place that I have came to. I got my diagnosis yesterday it was very vague and I'm slightly confuse. I was tested for cmt and it has came back PM22 hereditary neuropathy the doctor didn't know what it was so decided to make me "feel better" by entering the hospital letter
Hi I hope that this is the right place that I have came to. I got my diagnosis yesterday it was very vague and I'm slightly confuse. I was tested for cmt and it has came back PM22 hereditary neuropathy the doctor didn't know what it was so decided to make me "feel better" by entering the hospital letter
Ashley_x
in
Charcot-Marie-Tooth UK
11 years ago
Does CMT Pose a Threat To Life?
I have CMT 1a andhave always been told it has zero effect on longevity, however recent articles in the newspaper suggest it can effect the phrenic nerve that controls the diaphram. If that is the case surely it can lead to breathing difficulties and ultimately death?
I have CMT 1a andhave always been told it has zero effect on longevity, however recent articles in the newspaper suggest it can effect the phrenic nerve that controls the diaphram. If that is the case surely it can lead to breathing difficulties and ultimately death?
PhilC
in
Charcot-Marie-Tooth UK
11 years ago
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