NeuroTalk Support Groups - 1:1280 ANA twice over two years

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- New Member Introductions (https://www.neurotalk.org/new-member-introductions/)

- - 1:1280 ANA twice over two years (https://www.neurotalk.org/new-member-introductions/214335-1-1280-ana-twice.html)

Lara	01-05-2015 03:31 PM

CMT -

I saved something in my Notepad that I read the other day.

This is from our Health News Headlines in December

http://neurotalk.psychcentral.com/thread213689.html
Pharnext drug shows promise in neurological disease with no treatment

http://news.yahoo.com/pharnext-drug-...010044346.html

Kitt	01-05-2015 05:14 PM

Actually there are about 2,500 people world wide with CMT. 150,000 in the U.S. alone. Treatment/cure has a long road ahead. Many, many types and subtypes of it. It's considered an orphan disease so not much interest for companies to make a drug where so few, so to speak, would use it. And it would take a long, long time to do it.

remotetime

01-05-2015 06:28 PM

Thanks, that's interesting. My nephew's

Quote:

Originally Posted by Kitt (Post 1116521)

Hi,

Vitamins are not a help. There is no magic bullet for CMT.

The only advantage is knowing what you have for certain. You also can deal with the symptoms as they come along. Yes, there is no cure/treatment for CMT at the present time. However, lots of research is already being done. It has been done and is going on. I doubt in my lifetime there will be any cure/treatment for CMT.

Each child has a 50/50% chance of getting CMT. As I said, symptoms can vary greatly even within the same family.

neurologist, who gave him a clinical CMT diagnosis told my nephew and his family that vitamin C could slow progression. That was some time ago, but I started taking it anyway. It's now known not to help? I didn't check newer research.

Assuming that is my problem.

Kitt	01-05-2015 06:38 PM

Quote:

Originally Posted by remotetime (Post 1116593)

They have done numerous trials and it does not help. These trials are for people who have CMT1A. Here is just one trial. There are many more.

http://www.muscular-dystrophy.org/re...-tooth_disease

kiwi33

04-10-2015 08:02 PM

Hi remotetime

The very technical information in this link might help if you decide to approach Athena Diagnostics for genetic testing concerning Charcot-Marie-Tooth disease.

http://ghr.nlm.nih.gov/condition/cha...-tooth-disease

Kitt	04-11-2015 09:42 AM

A good site. However, DNA blood testing is expensive. And if they have to test for all of the types that they can now test for it really is expensive. And even if DNA testing does not come up with a type, it could mean that another type comes into play.

remotetime should call them and see how they might be able to help.

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

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