Nemaline Myopathy Support Group

Resources

Sporadic Late Onset Nemaline Myopathy (SLONM)

also known as Adult Onset

SLONM is even more rare than the other forms of NM. However, some scientists regard it a separate disorder as it is thought SLONM is not genetic, but rather, "acquired" in some other way.

Four adults met online via the NM website and decided they would like to communicate and share their experiences of challenges and treatments separate from the general family NM chat group. A chat group for people with SLONM has been set up and now boasts 15 members. Jonathan, Ken, Margaret, and Gins now share details of their IVIG treatment to greatly improve their ability to enjoy daily life with this disorder. If you have or know of someone with SLONM, then we would be delighted to hear from you. This page was created in February 2011 as the first one for SLONM, and will become the main source of information shared among those with this disorder.

SLONM Network

March 5, 2015
There is now a chat group for SLONM on Facebook.

Here is one interesting story of Anthony Ricupati's quest to find a cure for his SLONM.

Jonathan (USA)

I started having difficulty getting out of low seating in August of 2001. I had been vaccinated to protect from Lyme disease in 2000 but came down with the typical Lyme symptoms after being bitten by a tick in June 2001. I was immediately treated with antibiotics, the symptoms went away, and I never showed positive tests for Lyme. The weakness continued to increase and in 2003 my doctor suggested I see a neurologist who gave me an EMG. That showed some irregularities so he ordered a biopsy. The biopsy indicated something was wrong, but couldn't be determined what it was. The neurologist had some theories but nothing definitive. I saw several other doctors (at least 20) over the next two years. By this time I had gotten so weak that I could not hold my head up and could not lift much of anything. I could walk, but had difficulty walking up stairs. In November 2005 I went to the Mayo clinic. They did another biopsy and found the SLONM. They were very discouraging because they had never been able to successfully treat the condition. I found David's website. On it I found some email addresses of other NM patients and randomly picked a few to write to. I got responses from two who were being treated successfully with IVIG. I spoke to my neurologist and primary care about it. They were cautiously supportive of the idea. At about the same time I found a doctor who specialized in treating patients who had had Lyme or a negative reaction to the Lyme vaccine. He strongly believes that my condition is the result of a reaction to the vaccine that manifested itself into SLONM. He also believes it is probably an autoimmune condition. His solution was to try the IVIG, which I started the last week of 2005. Within a few weeks I could hold my head up again. I continued to improve for about 3 years, but have been losing some ground recently. David suggested that we set up a special SLONM group for those of us with this unusual nemaline myopathy. Perhaps those with it can help each other find a lasting solution. I have, because of space constraints, had to leave much of my experience out of this synopsis. I feel I could write a whole book about my experience.

Jonathan died in May 2012.

Ken (USA)

Ken published his autobiography in 2011. No cure, No surrender is available through Amazon Books.

Medical contact

Margurite Malone at Mayo Clinic in Rochester, Minnesota, MN
Marsha,- If this is adult onset, she might be a good contact (2013)

Resources

Science papers

2009
Sporadic late onset nemaline myopathy responsive to IVIg and immunotherapy
Margherita Milone MD, PhD, Amiram Katz MD, Anthony A. Amato MD, Carl A. Soderland MD, MPH, Miruna Segarceanu MD, Nathan P. Young DO, H. Royden Jones MD
Abstract

2008
Stem Cell Transplantation in a Patient with Late Onset Nemaline Myopathy and Gammopathy
O. Benveniste, MD, PhD; P. Laforet, MD; O. Dubourg, MD, PhD; S. Solly, PhD; L. Musset, PhD; S. Choquet, MD; N. Azar, MD; M. Fardeau, MD, PhD; S. Herson, MD; V. Leblond, MD, PhD; B. Eymard, MD, PhD. Neurology 71 August 12, 2008
Abstract

Sporadic Late Onset Nemaline myopathy effectively treated by melphalan and Stem Cell Transplant
Abstract

2005
Sporadic late onset nemaline myopathy
Nizar Chahin, MD, Duygu Selcen, MD and Andrew G. Engel, MD
Abstract


1999
Adult-onset nemaline myopathy: Another cause of dropped head
Abstract

Downloads

2010
Spradic Late Onset Nemaline Myopathy Responsive to IVIG and Immunotherapy
Download

2008
Two Patients with Sporadic Late-Onset Nemaline Myopathy Respond to Stem Cell Therapy
Download

2008
Sporadic Late-Onset Nemaline Myopathy Effectively Treated by Melphalan and Stemcell Transplant
Download

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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