CMTA
 

We are excited to announce the new CMTA Forum at www.cmtausa.org/url/forum! Check it out, introduce yourself, and help grow and connect our community.

We'll keep this old forum online in read-only mode for a while, but we'll be taking it offline eventually, so please make sure to visit the new forum.

For your convenience, we've set up the new forum so that you can log in with the same username and password that you use to log in to the website at www.cmtausa.org as a registered member of the CMTA Online Community or as a Premium Member.

 
Roussy Levy Tremor
Goto page 1, 2  Next
 
This forum is locked: you cannot post, reply to, or edit topics.   This topic is locked: you cannot edit posts or make replies.    cmtausa.org Forum Index -> Diagnosis, Genetics, Inheritance
View previous topic :: View next topic  
Author Message
Sharon Craddock



Joined: 11 May 2007
Posts: 4

PostPosted: Sat May 12, 2007 1:30 pm    Post subject: Roussy Levy Tremor Reply with quote

Can anyone tell me if they have tremors or has heard of Roussy Levy?
Back to top
View user's profile Send private message
Pam



Joined: 28 May 2005
Posts: 680
Location: Southeast Ohio

PostPosted: Sat May 12, 2007 2:42 pm    Post subject: Reply with quote

Many people with CMT experience tremors. I'm 49 and have had them at times since I was in my 20s. Sometimes they're worse than others, mainly with a lot of stress or overexertion.
I've heard the term Roussy Levy or something similar to that, but never paid much attention to it. Confused
Hope this helps. Oh, and welcome to the site! Very Happy
_________________
Pam

Save lives! Be an organ and/or bone marrow donor!
Back to top
View user's profile Send private message Send e-mail
Sharon Craddock



Joined: 11 May 2007
Posts: 4

PostPosted: Sat May 12, 2007 2:57 pm    Post subject: Tremors Reply with quote

Thank you Pam. I have had tremors in my neck that makes my head shake since I was 20, I am 50 now. I have tried a lot of different meds, but nothing seems to work, just have other side effects with them. I would like to find something that will work for me. Sad
Back to top
View user's profile Send private message
Pam



Joined: 28 May 2005
Posts: 680
Location: Southeast Ohio

PostPosted: Sat May 12, 2007 3:38 pm    Post subject: Reply with quote

Isn't that what Katherine Hepburn had?? Do you have CMT?
_________________
Pam

Save lives! Be an organ and/or bone marrow donor!
Back to top
View user's profile Send private message Send e-mail
Sharon Craddock



Joined: 11 May 2007
Posts: 4

PostPosted: Sat May 12, 2007 3:45 pm    Post subject: Reply with quote

Yes, I do have CMT and the doctor says my shaking comes from it and it is called Roussy Levy. It is just like Audrey.
Back to top
View user's profile Send private message
Autumn33



Joined: 29 May 2005
Posts: 3811

PostPosted: Sat May 12, 2007 5:09 pm    Post subject: Reply with quote

Welcome Sharon. Here is a site for Roussy-Levy which you may have read or know about.

www.peacehealth.org/kbase/nord/nord785.htm

Katherine Hepburn had "Essential Tremor" which is similar to Parkinson's Disease and may develop into Parkinson's Disease. It also can run in families. It's not the same as Charcot-Marie-Tooth Roussy-Levy Disease which your doctor says you have which is in the CMT types.
_________________
Autumn33
Back to top
View user's profile Send private message
Nita



Joined: 02 Jun 2005
Posts: 223
Location: Auburndale, FL

PostPosted: Sat May 12, 2007 7:02 pm    Post subject: Reply with quote

Welcome Sharon. I have had tremors in my hands all my life (I am 51), which the Drs. said where CMT related. Never found anything to stop them.
_________________
Nita
I wish you enough!
Back to top
View user's profile Send private message Send e-mail
Retlaw



Joined: 30 Jun 2006
Posts: 954

PostPosted: Sat May 12, 2007 7:17 pm    Post subject: Roussey Levy CMT tremor Reply with quote

I too have tremors. Started when I was 19. My tremor surges come and go, stress will make them worse. Amitriptyline works well for my tremor suppression. I have CMT 2, not 1B, but this paper below suggests this tremor is associated with Type 1B.


Ann Neurol. 1999 Nov;46(5):770-3.

The Roussy-Levy family: from the original description to the gene.

Plante-Bordeneuve V, Guiochon-Mantel A, Lacroix C, Lapresle J, Said G.

Department of Neurology, Centre Hospitalier-Universitaire de Bicetre, Universite Paris Sud, Le Kremlin Bicetre, France.

In 1926, Roussy and Levy described a large family whose members manifested an early onset dominantly inherited gait ataxia, pes cavus, and areflexia, which was eventually associated with distal muscle atrophy, postural tremor, and minor sensory loss. Slow nerve conduction and demyelination of nerve fibers with onion bulb formations in nerve biopsy specimens led to the Roussy-Levy syndrome (RLS) being considered a variant of demyelinating Charcot-Marie-Tooth disease (CMT-1). In the present article, we report on the long-term follow-up, on nerve biopsy findings, and on the underlying molecular genetic defect in members of the original family studied by Roussy and Levy. All patients were able to walk during their seventh decade of life. Morphologically, a chronic demyelinating neuropathy with the remarkable aspects of a focally hypertrophic myelin sheath and major loss of myelinated fibers was observed in nerve biopsy specimens of 3 members of this family. Molecular genetic testing identified a previously unknown heterozygous missense point mutation which yielded an Asn131Lys substitution in the extracellular domain of the myelin protein zero (P0). These findings show that the Roussy-Levy family belongs to the CMT-1B subtype and has original morphological and genetic features.
_________________
Keep the awareness momentum going at http://cmtushope.info
Back to top
View user's profile Send private message
Sharon Craddock



Joined: 11 May 2007
Posts: 4

PostPosted: Sun May 13, 2007 4:13 am    Post subject: Roussy Levy Reply with quote

Thank you for the information you sent. Are your tremors in your neck?
Back to top
View user's profile Send private message
Retlaw



Joined: 30 Jun 2006
Posts: 954

PostPosted: Sun May 13, 2007 11:44 am    Post subject: tremors Reply with quote

No tremors in my neck.
_________________
Keep the awareness momentum going at http://cmtushope.info
Back to top
View user's profile Send private message
Cathy



Joined: 31 May 2005
Posts: 3395
Location: Connecticut

PostPosted: Sun May 13, 2007 4:31 pm    Post subject: Reply with quote

Hi Sharon and welocme to our family.I have only very slight tremors in my hands.
_________________
"Live with hope rather than fear for no one knows their future." Cathy

"Only those who will risk going too far can possibly find out how far one can go." T. S. Eliot
Back to top
View user's profile Send private message Send e-mail
WondernStranger



Joined: 30 Nov 2006
Posts: 1141
Location: Virginia

PostPosted: Mon May 14, 2007 9:51 am    Post subject: Reply with quote

Welcome to the family, Sharon! I have CMT2a2 and have hand tremors which my neurologist says in independant of the CMT, but I think they're related. I don't take any meds for it.
_________________
~Kate

"Pain is inevitable but misery is optional." -Barbara Johnson
Back to top
View user's profile Send private message
Jean



Joined: 16 May 2007
Posts: 6
Location: New Westminster, Canada

PostPosted: Sun May 20, 2007 9:02 pm    Post subject: Reply with quote

I always had hand tremors (way before I was diagnose with CMT) and usually worst when I'm stress. With CMT I also have muscle twitching in my legs, hands and everywhere on and off. All my bloodwork seems to be normal so my doctor doesn't think its from electrolyte imbalance.
Back to top
View user's profile Send private message
Pam



Joined: 28 May 2005
Posts: 680
Location: Southeast Ohio

PostPosted: Sun May 20, 2007 9:27 pm    Post subject: Reply with quote

Many doctors don't attribute the hand tremors to CMT, but so many of us have them that it's hard to believe they aren't related. Yours may have been one of your first symptoms.
_________________
Pam

Save lives! Be an organ and/or bone marrow donor!
Back to top
View user's profile Send private message Send e-mail
Nita



Joined: 02 Jun 2005
Posts: 223
Location: Auburndale, FL

PostPosted: Mon May 21, 2007 5:17 pm    Post subject: Reply with quote

All my doctors throughout the years attributed my tremors to CMT. Also, I get little "water bumps" on my fingers and use to get them on the side of my feet that my doctors said were CMT related. They itched like all get out and after they dried up my skin will peel. Anyone experience that? Question
_________________
Nita
I wish you enough!
Back to top
View user's profile Send private message Send e-mail
Display posts from previous:   
This forum is locked: you cannot post, reply to, or edit topics.   This topic is locked: you cannot edit posts or make replies.    cmtausa.org Forum Index -> Diagnosis, Genetics, Inheritance All times are GMT - 5 Hours
Goto page 1, 2  Next
Page 1 of 2

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum


Powered by phpBB © 2001, 2005 phpBB Group