This seminar is of interest to anyone dealing with a progressive neurological disease without a treatment or cure. It is intended for physicians but families are always welcome. Please share the details with your doctor and join us online on Monday Sept 21st at 1pm, simply follow the instructions at www.ntsad.org.
National Tay-Sachs & Allied Diseases Association, Inc (NTSAD) and Brigham & Women’s Hospital are pleased to offer a CME Conference, Diagnosis, Management & Treatment of Progressive Neurological Disease from Infancy to Adult using Tay-Sachs Disease as a Model. This CME Conference for specialized clinicians and general practitioners will be held on Monday, September 21st from 1 – 5PM at the Joseph B. Martin Conference Center at Harvard Medical School. It will also be available by Webcast.
The program consists of leading lysosomal clinicians discussing case studies along the continuum of severity; several include the family perspective. Topics include road to diagnosis, critical moments in care and providing compassionate symptom management.
Program Objectives:
• Improved differential diagnosis of neurodegenerative disease
• Improved clinical care of progressive neurological diseases along the spectrum from acute to chronic
• Improved understanding of the family perspective, their road to diagnosis & providing family centered-care
• Secondary goal: improved knowledge of neurodegenerative lysosomal disease
Please see www.ntsad.org for further information.
Harvard Medical School is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing education for physicians. Harvard Medical School designates this educational activity for a maximum of 4 AMA PRA Category 1 credits. TM.
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Diagnosis, Management & Treatment of Progressive Neurological Disease
- By Kim
- Posted September 8, 2009 at 3:51 pm · 2 replies
- In My disease has no treatment
- Shared with the public
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Lysosomal disease Medrol Pain Chronic pain Tay-Sachs disease Arachnoiditis Depo-Medrol
2 replies
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- Newest first
- By dianes123
- Posted September 21, 2009 at 9:55 am
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I have Arachnoiditis, I have been researching all and any cure's out there but to date have found none, One thing a lot of people due have in common is the fact that during what they thought was going to be a simple operation like myself, a L/3 L/4 lamenectomy and partial discectomy to control inflamation after most of the prosecure is done the doctors use Depo-Medrol on the open incesion threw the epdural that they have in you during operation.
I happened to be allergic to steroids and am now loosing most of the control of my legs, if I fall now or my legs just give out on me I cannot get up the feelings in my legs are like they do not register with my will to get up and my arms are way too weak to help me. I have lost 60 lbs. since May of '08 but I could have lost them anyway.
My Pain Management Doctor and I have been trying to get a pain med to releive some of the chronic pain but to date none seem to help but to maybe 10%. I am not a canidate for a SCS due to the amount of scaring I have, a few days later after the original operation I developed a tear in my spinal cord and 3 days after that they finally operated, so I was actually operated twice one on tho of the other.
I also have now epidural fibrosis, lumbar and cervical Spondylosis on the cervical over 4 vertabrae and what's called post laminectomy disorder which from my perspective that means anyother thing else that's now wrong with my body.
I wouldn't even wish this whole thing on my worst enemy. My original orthopedic surgeon gave up on me and it wasn't found out until I saw a Neurologist that is very good and he broke the news to me and like most others I was arachno-Wat? No body now's of this diese even most spinal web pages only mention it briefly. We need more information out there for victims of this disease. More people to get out and keep us posted with any and all possible trials and treatment that is available. I found that early in diesese and wish I could get it now the warm water therapy with the jets on at the end at least kept my musules from getting athropy.
Please excuse my letter from any mistakes - I have been also having problems with my eyes for @5 plus months, cannot seem to be able to get a right script and have been very sensitive to light, blurry and double bision.
Thank you for your time.
Diane Hardman
- By Kim
- Posted September 23, 2009 at 2:26 pm
- Report post
Hi Diane,
I am so very sorry for all your health struggles. Clearly you are a very strong and determined woman. I will keep you in my thoughts and prayers.
Warmest wishes,
Kim
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