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Richard Weston
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- encinitas, CA
- United States
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thank you for the advise.
Peter - I would recommend you hop over to the Myotonic Dystrophy Foundation community website. It has a lot more activity and a larger audience of people that may be able to help. http://www.myotonic.org
hi every one, My wife and two children have just been dianosed with Myotonic Dystrophy and i am having loads of problems with my daughter the eldest she is not gaining any weight and i dont know if this is a part of the condition or not.
This group is dedicated to issue that parents have mainly with children of the congenital or juvenile forms of Myotonic Dystrophy
Hi Katerina - I have never heard of Myoclonic before so I don't believe it is the same. From what I just searched on Google, it is when people have twitching or seizures. This is not a common characteristic of Myotonic Dystrophy.
Hi, I'm new to all of this & I have a question.......my 9-yr. old son has been diagnosed with Myoclonic Dystrophy & I want to know is it the same or similar to Myotonic Dystrophy, what is it exactly, how is it treated, etc. I found this out because…
This group is dedicated to issue that parents have mainly with children of the congenital or juvenile forms of Myotonic Dystrophy
There is a lot of research going on at the basic science level. John Porter at the USA NIH challenged the researchers to try and begin to get some drugs into therapies. There is a lot going on and treatment potential is near. Sorry for all the troub…
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Information on Swallowing Issues
Recently we have gotten several emails about swallowing issues with Patients with DM1 here is some additional information. Full text with photos: http://www.aafp.org/afp/20000415/2453.html
Evaluation and Treatment of Swallowing Impairments
JEFFREY B. PALMER, M.D., and
JENNIFER C. DRENNAN, M.S.
Good Samaritan Hospital, Baltimore, Maryland
MIKOTO BABA, M.D., SC.D.
Fujita Health University, Nagoya, Japan
Swal… Continue
Evaluation and Treatment of Swallowing Impairments
JEFFREY B. PALMER, M.D., and
JENNIFER C. DRENNAN, M.S.
Good Samaritan Hospital, Baltimore, Maryland
MIKOTO BABA, M.D., SC.D.
Fujita Health University, Nagoya, Japan
Swal… Continue
Posted on October 13, 2009 at 8:46am — 1 Comment
Updated iPlex information from Insmed
Insmed is now not in a position to make more iPlex and they are looking at their options as to how to proceed. Here is a press release from the Company.
Insmed Provides Update on Supply of IPLEX(TM)
Company to Provide Remaining Supply of IPLEX(TM) to Ensure Continued Access
RICHMOND, Va., July 27 /PRNewswire-FirstCall/ -- Insmed Inc. (Nasda… Continue
Insmed Provides Update on Supply of IPLEX(TM)
Company to Provide Remaining Supply of IPLEX(TM) to Ensure Continued Access
RICHMOND, Va., July 27 /PRNewswire-FirstCall/ -- Insmed Inc. (Nasda… Continue
Posted on July 28, 2009 at 10:42am —
Another Advance in a Potential Treatment for Myotonic Dystrophy
Genetic Source Of Muscular Dystrophy Neutralized: Possible Cure?
ScienceDaily (July 17, 2009) — Researchers at the University of Rochester Medical Center have found a way to block the genetic flaw at the heart of a common form of muscular dystrophy. The results of the study, which were published July 16 in the journal Science, could pave the way for new therapies that essentially reverse the symptoms of… Continue
ScienceDaily (July 17, 2009) — Researchers at the University of Rochester Medical Center have found a way to block the genetic flaw at the heart of a common form of muscular dystrophy. The results of the study, which were published July 16 in the journal Science, could pave the way for new therapies that essentially reverse the symptoms of… Continue
Posted on July 19, 2009 at 5:49pm —
An alterative view of the iPlex Study, some positive indications
INSMED’S (INSM) DRUG IPLEX™: VALUABLE, OR NOT VALUABLE?
After Insmed announced results from phase 2 clinical trial evaluating Iplex™ (mecaser-min rinfabate) on patients with myotonic muscular dystrophy ("MMD"), investors instigated a hysterical sell off of INSM on a very high volume. Capital is a coward, we know, especially in shaky economies, yet aggress… Continue
After Insmed announced results from phase 2 clinical trial evaluating Iplex™ (mecaser-min rinfabate) on patients with myotonic muscular dystrophy ("MMD"), investors instigated a hysterical sell off of INSM on a very high volume. Capital is a coward, we know, especially in shaky economies, yet aggress… Continue
Posted on July 19, 2009 at 4:08am —
Iplex results released. I could just Cry!
INSMED ANNOUNCES RESULTS OF IPLEX™ PHASE II
TRIAL IN MYOTONIC MUSCULAR DYSTROPHY
Insmed to Evaluate Potential Initiation of Phase II Trial for IPLEX™
in MMD Patients with Severe Insulin Resistance
RICHMOND, VA., June 25, 2009 - Insmed Inc. (NASDAQ CM: INSM), a biopharmaceutical company, today announced results from its exploratory U.S. Phase II clinical trial evaluating IPLEX™ (mecasermin rinfabate) in patients with myotonic muscular dystrophy (“MMD”). The randomized, double-blind, place… Continue
TRIAL IN MYOTONIC MUSCULAR DYSTROPHY
Insmed to Evaluate Potential Initiation of Phase II Trial for IPLEX™
in MMD Patients with Severe Insulin Resistance
RICHMOND, VA., June 25, 2009 - Insmed Inc. (NASDAQ CM: INSM), a biopharmaceutical company, today announced results from its exploratory U.S. Phase II clinical trial evaluating IPLEX™ (mecasermin rinfabate) in patients with myotonic muscular dystrophy (“MMD”). The randomized, double-blind, place… Continue
Posted on June 25, 2009 at 6:24pm — 1 Comment
Comment Wall (8 comments)
- At 1:22pm on October 13, 2009,
Maurice G. Coderre said… - Since Paul and I put the DM1 brochure together Iplex seems to have fizzled as a possible treatment for DM1. The news out of the University of Rochester research is more exciting for a possible cure that may even reverse some of the affects of DM1. Still a way off but we can hope!! As for the question you put to Paul on Provigil; well - it was a one year battle that required several letters from Paul's doctor to get the insursnce to pay for it. In the end they did agree to pay for it ($1,300 per 90 day supply) with a yearly review. We will be comming up on our first yearly review early next year.
Maurice G. Coderre
- At 6:32pm on October 8, 2009,
Paul M. Coderre said… - Richard So sorry for not getting back to you sooner abuot my brocuer I know my dad posted it he helped me make it.
I hope that it is of hlep to you and your son.
- At 3:07pm on September 6, 2009,
Martin said… - Hi Richard,
I will arrive in Würzburg on Friday 11th september in the afternoon/evening, I hope to meet you and Dr. Mishra, maybe at a Dinner.
Regards Martin
- At 5:38am on August 7, 2009,
mark david drain said…
- thankyou for your response
- At 5:52pm on July 28, 2009,
Kathy Weibel said…
- If you get to Florida and are close to Tampa check out "Winter" a special needs dolphin. She is beautiful! There are probably Youtube videos on her but I am not sure. She is at the Clearwater Rescue Marina. She was caught in a fishing line and lost her fluke tail fin. She has adapted how to swim and a local company is making her a prostetic tail! It is an amazing story. You can also arrange for Chris to pet and have his picture taken with the dolphins for a about $40,00. It is a small resuce and release program but is well worth the look.
I wish the Dynovox would work for Chris. When I come across others I will let you know. In Indiana we have PATINS. It is a "lending library" for assistive technology. You can borrow just about anything and try it out for 6-8 weeks. If it works for you then you can order it. There is no cost or obligation for trying items. Tell Chris I say hi! He has lots of friends out there.
- At 7:46am on July 24, 2009,
Kathy Weibel said…
- Richard,
I remember meeting your son, Chris, at the conference! We played computer together for a while. He enjoyed showing me games he was playing. It was a lot of fun! Is Chris using a Dynovox communication device? I wonder if something like that would be useful for him. Blessings Kathy
- At 8:50am on November 5, 2008,
Caroline said…
- Hi Richard,
I have just joined the site. Nice to meet you!
I was wondering if you knew much about the correlation between genetic repeats and symptoms of MD?
I have type1 MD and have been told I am 'high risk' in terms of developing symptoms. I have aslo been told that I only have 70 repeats therefore they should ge very mild.
I am aware that it is generally accepted that the higher the level of repeats the worse the symptoms.
Well, this confuses me!
For the last few years I have had symptoms of tiredness and lethargy, I take Modafanil PRN. I have myononia in both hands. I struggle to get up from the floor and out of the bath. I have irritable bowel.
I am a senior nurse in the NHS. I am currently off sick from work as I no longer feel that I am safe to practice Getting people to understand my reasons for that is a challenge in itself!!.
My short term memory is bad. My focus and concentration levels are poor.
When I am speaking, I often cant find single words I want to use, usually at the end of a sentance.These are normally words that describe objects. I also have difficulty relaying stories, things that have happened. There is more too!!
I am waiting to see a neuropsychologist for a full cognitive assessment.
Any advice/guidance you can give me would be appreciated as I am in quite a scary place at the moment! Do you know any neuropsychologists that I could possibly email?
Hope you are well!
Take care
Caroline
- At 12:50pm on October 5, 2008,
Noelene said… - Hi Richard
In Australia they hardly know anything about Myotonic. Both the boys are being put on a drug for there excessive sleeping but I have no idea what its called as its cost $2000.00 per child. I am waiting on the hospital to give me a call and see if they can pay for it.
A specialist from Hong Kong seen the boys last week he seemed to know what they needed i.e. this drug. My eldest boy will be PEG feed sometime this week I hope but our hospitals are a nightmare to get into.
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