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can I do anything about my balance
Hi I am a 72 yr old diagnosed with charcott marie tooth disease probably type 2,I but not confirmed by nerve biopsy. I take 2 gabapentin 300ml.tablets per day. My problem is that I have completely lost my balance, I can walk o/k but if I meet someone in the street I have to find a lampost or a wall
Hi I am a 72 yr old diagnosed with charcott marie tooth disease probably type 2,I but not confirmed by nerve biopsy. I take 2 gabapentin 300ml.tablets per day. My problem is that I have completely lost my balance, I can walk o/k but if I meet someone in the street I have to find a lampost or a wall
pikelet
in
Charcot-Marie-Tooth UK
11 years ago
How can you diagnose CMT ?
Hi there . I would be really grateful for a bit of advice. I am keen to get to the bottom of my symptoms but dont seem to be getting anywhere fast. I am 40 years old and have symptoms for the last 8months. I have always had " hobbit feet ! " curled toes and high arches which have been hurting significantly
Hi there . I would be really grateful for a bit of advice. I am keen to get to the bottom of my symptoms but dont seem to be getting anywhere fast. I am 40 years old and have symptoms for the last 8months. I have always had " hobbit feet ! " curled toes and high arches which have been hurting significantly
Stanleyollie
in
Charcot-Marie-Tooth UK
11 years ago
I found this off another site.
Straight from the Horses Mouth! More News The Secretary of State for Health states doctors can use other thyroid hormones other than levothyroxine-only; they can prescribe unlicensed drugs; they can follow whatever guidelines they wish even if they are from another country. Because I
Straight from the Horses Mouth! More News The Secretary of State for Health states doctors can use other thyroid hormones other than levothyroxine-only; they can prescribe unlicensed drugs; they can follow whatever guidelines they wish even if they are from another country. Because I
julieknight
in
Thyroid UK
11 years ago
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Thyroid Petition Debate at Scottish Parliament on Tuesday 5 Feb (tomorrow!)
This is edited and posted from an email I had from the TPA (Thyroid Patient Advocacy) although the parliament petition I believe is from individuals, with the TPA supporting them. I hope this does not contradict any guidelines by posting about another organisation. I'm not a member of their group but
This is edited and posted from an email I had from the TPA (Thyroid Patient Advocacy) although the parliament petition I believe is from individuals, with the TPA supporting them. I hope this does not contradict any guidelines by posting about another organisation. I'm not a member of their group but
Totoro
in
Thyroid UK
11 years ago
Ordering from Nutri can you direct me to the how to post?
I'm sure only a few days ago I saw a post of how to access Nutri discount. I have duly registered with TPA but now can't remember where I found the phone number for "James" the chap who we need to order through. can anyone signpost me back to it . THANKS !!
I'm sure only a few days ago I saw a post of how to access Nutri discount. I have duly registered with TPA but now can't remember where I found the phone number for "James" the chap who we need to order through. can anyone signpost me back to it . THANKS !!
sarahstevenson
in
Thyroid UK
11 years ago
Plaquenil and Pregabalin with Activated Charcoal?
Hi all, Anyone know if it is OK to take charcoal capsules whilst on plaquenil and pregabalin? I've found they're fantastic for reducing the flatulence problem but then I googled and saw that it can also absorb the active effects of the drugs as well... They're used to treat overdoses of the drugs
Hi all, Anyone know if it is OK to take charcoal capsules whilst on plaquenil and pregabalin? I've found they're fantastic for reducing the flatulence problem but then I googled and saw that it can also absorb the active effects of the drugs as well... They're used to treat overdoses of the drugs
Jennie_103
in
LUPUS UK
12 years ago
Charcoal and gluten poisoning
One is the type used on some barbeques (BBQ's) the other is a stomach medicine '
activated
charcoal
' otherwise known as
activated
carbon or activated coal. Both versions may pose risks.
One is the type used on some barbeques (BBQ's) the other is a stomach medicine '
activated
charcoal
' otherwise known as
activated
carbon or activated coal. Both versions may pose risks.
Lynxcat
in
Gluten Free Guerrillas
12 years ago
Advice Needed!
Can anyone tell me why all us sufferers are not exempt from these medicals with ATOS? My HNPP is really really bad at the moment, I have a floppy left leg and my hands are totally numb, I can't even pop out my tablets; thank goodness the weekend is here and my daughter can help me, but seriously why
Can anyone tell me why all us sufferers are not exempt from these medicals with ATOS? My HNPP is really really bad at the moment, I have a floppy left leg and my hands are totally numb, I can't even pop out my tablets; thank goodness the weekend is here and my daughter can help me, but seriously why
Pam49
in
Charcot-Marie-Tooth UK
12 years ago
Medical!! Has anyone kept their benefit?
Hi has anyone with HNPP or CMT had one of these stupid medicals and managed to hold on to their benefits as a result of it? All I keep reading is the usual total negativity from sufferers as the examiners try to catch them out with silly questions! I am beginning to get worried now as I have one on
Hi has anyone with HNPP or CMT had one of these stupid medicals and managed to hold on to their benefits as a result of it? All I keep reading is the usual total negativity from sufferers as the examiners try to catch them out with silly questions! I am beginning to get worried now as I have one on
Pam49
in
Charcot-Marie-Tooth UK
12 years ago
Dead leg and Floppy Foot
Any ideas on medication for Floppy Foot (CMT) HNPP My dad suffers from CMT (HNPP) like me, only he seems to be affected more with the floppy foot and aching leg after too much walking. Has anyone any suggestions on medication that will help him? He has tried Pregabalin but it doesn't help. He is 74
Any ideas on medication for Floppy Foot (CMT) HNPP My dad suffers from CMT (HNPP) like me, only he seems to be affected more with the floppy foot and aching leg after too much walking. Has anyone any suggestions on medication that will help him? He has tried Pregabalin but it doesn't help. He is 74
Pam49
in
Charcot-Marie-Tooth UK
12 years ago
Information requested ?
Hello to all my fellow C.M.T. sufferers: I have inherited (from father) CMT type 1a since my birth (1945), although I did not know that: Finally at the age of 53 years due to further medical advances I was seen by a neurologist who new of this disease: I now have to wear "toe to knee" splints to support
Hello to all my fellow C.M.T. sufferers: I have inherited (from father) CMT type 1a since my birth (1945), although I did not know that: Finally at the age of 53 years due to further medical advances I was seen by a neurologist who new of this disease: I now have to wear "toe to knee" splints to support
John1945
in
Charcot-Marie-Tooth UK
12 years ago
BREATHING QUESTION from member "Gunner"
Gunner sent me a message asking the following and have answered to the best of my own personal experiences, but thought he'd benefit from input of others on this subject as breathing is not something that affects me too much at the moment. ----------------------------------- GUNNER ASKED: "I
Gunner sent me a message asking the following and have answered to the best of my own personal experiences, but thought he'd benefit from input of others on this subject as breathing is not something that affects me too much at the moment. ----------------------------------- GUNNER ASKED: "I
CMTerSam
Volunteer
in
Charcot-Marie-Tooth UK
12 years ago
Swelling feet and ankles
I have CMT1a ~ Does anyone suffer from swollen feet and ankles? Diuretics don't help. They are usually bearable but occasionally become quite painful and I have to elevate my legs for a few hours to get any relief. They soon return and it is now a chronic condition with which I am learning to live. Any
I have CMT1a ~ Does anyone suffer from swollen feet and ankles? Diuretics don't help. They are usually bearable but occasionally become quite painful and I have to elevate my legs for a few hours to get any relief. They soon return and it is now a chronic condition with which I am learning to live. Any
CMT2012
in
Charcot-Marie-Tooth UK
12 years ago
Does anyone suffer from sleep apnea?
Hi, about the time I was diagnosed with CMT 1a (10 years ago) my wife noticed that I stopped breathing for long periods when sleeping. I was referred by my GP to a sleep consultant. He took one look at me and said "I don't believe you have sleep apnea, you're fit and not overweight, you just don't fit
Hi, about the time I was diagnosed with CMT 1a (10 years ago) my wife noticed that I stopped breathing for long periods when sleeping. I was referred by my GP to a sleep consultant. He took one look at me and said "I don't believe you have sleep apnea, you're fit and not overweight, you just don't fit
HorshamMalc
in
Charcot-Marie-Tooth UK
12 years ago
New to the site son diagnosed today aged 5
We too have been diagnosed today. Our son is 5 but has had epilepsy since the age of 1, and today's results have come after many years of trying to establish the cause of this. Not sure that we've established that, but we can confirm CMT! He already uses a wheelchair for any distance as he has had mobility
We too have been diagnosed today. Our son is 5 but has had epilepsy since the age of 1, and today's results have come after many years of trying to establish the cause of this. Not sure that we've established that, but we can confirm CMT! He already uses a wheelchair for any distance as he has had mobility
Chelsea1504
in
Charcot-Marie-Tooth UK
12 years ago
swollen leg
Hi i have type 1a was diagnosed in1999, just lately started getting swelling in my right foot with redness as well does anyone else have this problem?
Hi i have type 1a was diagnosed in1999, just lately started getting swelling in my right foot with redness as well does anyone else have this problem?
john1966
in
Charcot-Marie-Tooth UK
12 years ago
Charcot-Marie-Tooth disease. Guide provided by the Muscular Dystrophy Campaign
Charcot-Marie-Tooth disease is named after the three neurologists who first described the condition in 1886. Many different names have been used to describe Charcot-Marie-Tooth disease but the other commonly used name is hereditary motor and sensory neuropathy. This is an accurate term as it refers to
Charcot-Marie-Tooth disease is named after the three neurologists who first described the condition in 1886. Many different names have been used to describe Charcot-Marie-Tooth disease but the other commonly used name is hereditary motor and sensory neuropathy. This is an accurate term as it refers to
CMTUnitedKindom
Partner
in
Charcot-Marie-Tooth UK
12 years ago
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