The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor.
Dr. Michael Levy, is a neurologist with 10 years of clinical and research expertise in rare neuroimmunological disorders. This Houston, Texas native earned his medical degree from Baylor College of Medicine. He then completed his residency in the Johns Hopkins neurology program in 2005, a fellowship in neuroimmunology in 2008, was a member of the faculty at Johns Hopkins University since 2009 and was the Director of the Johns Hopkins Neuromyelitis Optica Clinic.
He first became aware of superficial siderosis during his residency at the Johns Hopkins Hospital when a 48-year-old patient presented with unexplained symptoms and a two-year history of worsening gait, clumsiness, leg cramping, memory impairment, and dysarthriaOverview Cerebellar dysarthria is a distinct speech disorder... More. The patient’s medical history revealed a two-week hospital admission at the age of three after being involved in an auto accident that resulted in head trauma and a coma.
In a case study accepted September, 2006 by PubMed, peer-reviewed in February 2007, and updated in May 2012 American Journal of Neuroradiology, Dr. Levy and Dr. Llinas demonstrated the efficacy of deferiprone (Ferriprox), a lipid-soluble iron chelator, for reducing hemosiderin deposition through MR imaging of a single patient on deferiprone for 18 months.
Based on the findings of this single case report, Dr. Levy and Dr. Llinas were able to conduct a pilot trial of ten patients with superficial siderosis by using 30 mg/kg/day of deferiprone and found that four patients showed MR imaging changes in as little as 3 months. Results of this pilot trial demonstrated Ferriprox (deferiprone) is the only chelation treatment to show any efficacy, and its use emerged as the standard of care for the treatment of superficial siderosis.
Dr. Levy moved to Massachusetts General Hospital and Harvard Medical School in 2019 to continue his research work in superficial siderosis. Current projects are focused on expediting the iron chelation process, improving MRI outcomes measures and characterizing the pathological changes that occur in brain areas exposed to hemosiderin.
Dr. Levy has more than 95 peer-reviewed research articles, reviews, editorials, and 3 patents covering NMO tolerization therapy, TM diagnostics, and the stem cell regeneration approach. Dr. Levy is currently the chief editor at Multiple Sclerosis and Related Disorders and sits on the editorial board for Journal of Neurological Diseases and on scientific advisory boards for Alexion, MedImmune, Chugai, Shire, and Quest Diagnostics.
Hi . I am a past patient of Dr Levy while he was at Johns Hopkins and wish to connect with him again.
Can you please get me his email address currently at Mass. General .
Thank you.
Eileen
I was diagnosed with SS in March 2020. It began after my 7th spinal surgery in 2013. I had a horrible headache in rehab and the next year my excellent hearing went. Then my feet had neuropathy, my balance began to weaken, my memory got weaker. Now my gait is way off and my balance is bad. I use a walker and even then I fall. One doctor failed to find the leak, although he used angiograms. I need to speak with Dr. Levy on treatment options.
I need a tele meeting with Dr. Levy. My case is moving along swiftly and I cannot find a doctor locally who know what they are doing with SS. I have poor hearing, severe balance and gait problems, brain fog, peripherol neurropathy, etc. I believe that I had my first bleed in 2013. I have had MR
Is and angiograms.
I had the operation to stop the bleed two and one half years ago at Mayo in Rodchester. I seem to be getting worse. I have been on Ferriprox for 2 months. No charge. Nothing worse, nothing better. Any suggestions?
There are several members of the Facebook group who have reported all of their iron has been completely removed but they seem to be early participants. Reports seem to indicate complete chelation of the hemosiderin is at least a 5-6 year process. You will, unfortunately, continue to decline as long as any portion of the hemosiderin deposits remain even while you are on chelation therapy.
There is a research study going on now that involves a way to help improve the efficacy of the Ferriprox but I am not sure when it will complete. My husband has been on Ferriprox for five years, but because they have never tried to find his bleed, the hemosiderin remains intact with no improvement.
Has anyone else heard this? I just received this from the pharmacy oyn India where we get kelfer:
“notes from our pharmacist who reviewed your Rx, Health Profile and Order:
Deferiprone oral + Levetiracetam oral
Potential for serious interaction; regular monitoring by your doctor required or alternate medication may be needed. Deferiprone oral + Levetiracetam oral either increases the toxicity of the other by added drug effects.
Naturally, your Doctor is aware of this and it is his responsibility to ensure via regular bloodwork these conditions are monitored.
Many thanks,
Tony
Patient Account Manager”
Hi Steve, The warning about Deferiprone is not unusual. The U.S. pharmacy will also issue the same warning. Deferiprone has serious risks which is why blood test monitoring is so vital. There are some whose body just cannot tolerate deferiprone. My husband has been lucky, almost five years with no adverse effects but, this is not the case with everyone. It’s very important to follow the prescription guidelines set out by the manufacturer even if you’re sourcing it from out of the country.
Any positive results?
Linda Young, actually Dan’s upbeat comment was helpful to me. I currently am self catheter using , and know a wheel chair is in my offing. I will remember, HOPEFULLY, when I get to that stage of needing such supplies. I also was diagnosed in 2017, the result , I believe , of a 2003 c-5-6 surgery.
So the ferraprox would be used after it was determined that the bleeding has stopped?? But there is no undoing the damage already done ???.
Never would have learned about THIS site if it weren’t for Paul Toovey , so thank you Paul.
I was diagnosed with SS in 2011, and quickly found out that the local neurologist new very little about this rare condition. My daughter started to research and came across Dr Levy. My husband and I drove 900 miles to Baltimore to meet with Dr Levy, July 2012. I thank God for this amazing Dr who truly cares about his patients.
I could go on and on….
Thanks Dr Levy, and May God bless you for all you do!❤️
Dr. Levy has indeed been a great resource and he has empowered many Superficial Siderosis (SS) sufferers and caregivers with knowledge and a way forward and enabled them to facilitate educating the medical profession on this new and poorly known rare disease. Thank you Dr. Levy. A minor point for “Meet Dr. Levy” it would be nice if acronyms were explained the first time they occur (NM, MR etc.). Thank you very much.
I Have A 14 Month Old Granddaughter That
Brought Me In A Depend Diaper & Said To Me
Granddad We Can Share Diapers!!!
Oh Great !!!
With As Many Diapers I Go Thru I’ve Found
Out That Tena Is A Far Superior Brand Than
Depends!!!
Yes Their More Money But I Use Far Less !!!
I Learned From My Father Many Years Ago
Good Things Aren’t Cheap & Cheap Things
Aren’t Good!!!
Best Regards
Dan
How is this connected with superficial siderosis?
I live in Colorado, Would like to meet Dr. Levy if possible. Have heard a lot of good things about him with SS.
Dr. Levy is very busy. It was 6 months before I could get in to see him so make an appointment now! I ended up traveling to Baltimore in January.
It was such a relief to finally get my SS diagnosis confirmed. I had seen numerous doctors. Some said I had it and others said I didn’t. It was an ENT who ordered an MRI to rule out a tumor in my ear causing my increasing deafness that showed the SS again. It was mentioned in the synopsis of the report. The ENT made no reference to it. I found the entry myself. It was then that I searched the internet until I found Dr. Levy. It was a relief to have the SS confirmed but little could be done about it. Ferriprox was only being tried in limited trials that were difficult to get into.
Luckily progression has been slow and intermittent. Some days I have no symptoms except the hearing loss and other days I walk like I’m drunk and depend on my cane.
Uneven surfaces are a big concern problem. If I am with someone I have no problem asking for an arm to hang onto.
I was diagnosed with SS via radiology report from a head and cervical MRI in Nov 2017. I quickly learned much about SS through this website. Of course, it didn’t take long for me to realize that Dr. Levy is the foremost authority on this rare condition. He gladly made himself available as an information resource to my neurologist. As a result I have been of Ferriprox for ~ 9 months.
I actually made a trip to Boston a couple of weeks ago to meet Dr. Levy and review my MRIs and CT Myelograms. I must say that I am very impressed with his attentiveness, thoroughness, knowledge, and his caring and down-to-earth nature. No doubt, the SS community is blessed to have him in our corner. Thank you Dr. Levy!
I met dr levy in london with Jason Roberts
On 16th September 2016’and it was awesome