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Charcot-Marie-Tooth Disease (CMT)

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Unread 04-11-2012, 01:20 PM   #11
Kitt
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Arrow Charcot Marie Tooth Syndrome

Here us a site explaining some of it.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

Another site for Athena Diagnostics.

http://www.athenadiagnostics.com/content/index.jsp

Another site.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

Genetics and Inheritance.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

And another site.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

You can have flat feet, normal feet, or high arches. It depends on muscles involved. Hands and lower legs and feet involved. Or just your lower legs and feet. Or just your hands. Or finally both. One just doesn't know.
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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bumpy_road (06-21-2012)
Unread 04-19-2012, 02:02 PM   #12
Kitt
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Arrow Charcot-Marie-Tooth Syndrome, etc.

Here is another site explaining the difference between MS, MD, and CMT.

http://www.lindacrabtree.com/cmt/bas..._article2.html
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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bumpy_road (06-21-2012)
Unread 04-19-2012, 02:05 PM   #13
Kitt
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Attention CMT Medications List.

Medications List. Very important for people with CMT.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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bumpy_road (06-21-2012), glenntaj (04-20-2012), mrsD (04-19-2012), Susanne C. (04-19-2012)
Unread 04-20-2012, 09:24 AM   #14
Kitt
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Default

Another site.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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"Thanks for this!" says:
bumpy_road (06-21-2012)
Unread 04-20-2012, 09:25 AM   #15
Kitt
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Arrow Characteristics and Symptoms

Another site concerning Characteristics and Symptoms.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41[/QUOTE

Diagnosing CMT

http://www.cmtausa.org/index.php?opt...d=10&Itemid=43
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

Kitt is offline   Reply With Quote
"Thanks for this!" says:
bumpy_road (06-21-2012)
Unread 04-30-2012, 06:28 PM   #16
Kitt
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Arrow Charcot-Marie-Tooth Disease, Find a Physician -

Resource Directory.


http://www.cmtausa.org/index.php?opt...arch&Itemid=40
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

Kitt is offline   Reply With Quote
"Thanks for this!" says:
bumpy_road (06-21-2012)
Unread 06-21-2012, 06:30 PM   #17
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Arrow CMT1 and CMT2 EMG/NCV testing

When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced. All forms of CMT are either demylinating or axonal in nature. CMT is a multi-gene disorder and so there are many different genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive and usually slowly.

Family history would be a great help in diagnosing CMT although CMT has been misdiagnosed as other diseases. Symptoms vary greatly even within the same family.

It is very important that you have a neurologist who is an expert in CMT and would be the doctor to see to oversee an EMG/NCV test.

DNA blood testing might also be in order to either rule in CMT or rule it out. They now have DNA blood testing for many many types of CMT but if it would happen to be a type that they do not have testing for does not mean that you do not have it. DNA blood testing is very expensive especially if they have to do the whole panel of testing.
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

Kitt is offline   Reply With Quote
"Thanks for this!" says:
bumpy_road (06-21-2012)
Unread 06-21-2012, 10:55 PM   #18
bumpy_road
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Default Wow, Thank you.

Hi,
I'm so happy that I found this site, this is great. It's going to take me a bit to look through all those articles. I was diagnosed with CMT type 2 a few years ago, I'd have to go through my paperwork to find the exact year.
I had my blood DNA tested at the UBC Faculty of Medicine, and had lots of tests done within a two day visit. My Mother has it too, but not as bad as I do, and my son who's 21yrs old now still won't have the test done. He has a 50/50 chance of having it but he's a little afraid to find out I think, no symptoms for him yet at least. Mine are getting worse every year, It's hard to type with one shakey finger due to my hand muscles not knowing how much to tighten up. I now have a wheelchair, a walker, and my cane to get around. I don't go out much any more.
I also have Ehlers-Danlos Syndrome type 2 or 3, they can't make up their minds on that one, but my joints are'nt very stable, sometimes they can fall out of place with no warning, I have to be careful. Having CMT and EDS at the same time is not fun. It seems that any damage my body goes through, the pain sensations stay. I've had two minor knee surgeries, a couple of sprained ankels, and some arthritis, all still feeling like they just happened. The only pain meds I can take now is extra strength Tylenol, my body adaps quickly, It was hard to stop the narcotics, but It's been three years now. I also have major depression and anxiety issues. Too many other things to count as well. It's day to day,maybe I should have typed this somewhere else but I'm rather new to forums in general, and this took an hour to finish, I'm not to keen on starting over, oh well. Thanks again on all the new info, hope to talk with someone soon. Take care.
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Unread 06-22-2012, 06:41 AM   #19
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I do think it is important to have the testing, if other family members have this.

The reason is that some drugs can be avoided which may trigger symptoms in asymptomatic CMTers.

Here is one example:
http://www.theannals.com/content/ear...pdf+html?rss=1
This article is about a person with CMT who did not have symptoms until taking Levaquin.

Levaquin is a fluroquinolone drug in a family commonly used for infections. Cipro, Avelox are others. These drugs have been shown to cause neuropathy and nerve damage in some people.

One of the links earlier on this thread has lists of drugs to avoid with CMT. So anyone who is at risk should be tested so they can avoid further damage, or development of symptoms.
CMT is not well understood, and patients need to learn how to protect themselves, since doctors are often clueless about it.
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Unread 06-22-2012, 09:55 AM   #20
Kitt
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Then there is the other side of the coin. If a person does not have any symptoms of CMT and they get tested and find out that they indeed do carry it then they might have big time trouble getting insurance. If they go to work for a large company, they would automatically be covered by insurance. However, with a smaller company or with an individual insurance policy, they will likely be unable to get insurance. I had that happen. Or there might be a rider put on for CMT. Well, that doesn't help either. And this can happen whether a person has arthritis or any other number of diseases. I've seen that happen too.

Personally, I would never get tested as you do pretty much know that you have it if it's in the family history and symptoms come along. You can then deal with the symptoms as needed.

Yes, nowadays we have the list of drugs that could be problematic. Some are really bad. But in other times there was no such list. That isn't good either.

There is just such a fine line as to what to do. It is up to the person to decide after getting informed on the whole concept of CMT. And CMT is not well understood except by experts who know CMT. Many, many other doctors have heard maybe 10 minutes on it and they do not understand it anyway and they always say that they probably will never see another person who has CMT. And they are probably right. Or - they could be wrong and have already seen someone with it but did not recognize it.

CMT is also misdiagnosed as many other diseases. So it can be a mess when it comes to finding out about it. I am certainly no expert on it although I've seen it first hand when I was five years old. I didn't have symptoms then. Not until my early 50's. I've seen it way back in the generations after doing research. That is for the type that I have.
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

Kitt is offline   Reply With Quote
"Thanks for this!" says:
bumpy_road (06-22-2012), mrsD (06-22-2012), Susanne C. (06-23-2012)
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