|
Welcome to the Stiff Person Syndrome (Stiffman) Support List. Please save this message for future reference. Thank you.
NOTE: THIS LIST IS PRIVATE, YOU MAY NOT REPOST ANY OF THE CONTENT!!!
The purpose of this list is to provide those afflicted with Stiff Person Syndrome, or have someone in their life with SPS, a discussion forum to share the many issues involved with this syndrome: medication, treatment, symptoms, personal experiences and methods of coping with this rare illness. It is our hope this avenue of discussion will provide greater understanding of this rare illness along with the knowledge you are not alone.
This list is not affiliated nor endorses any medical facility, physician, treatment or charity. The stiffman.net list is not a charitable organization requiring funding or possessing funds. The stiffman.net list is not associated with nor endorses any posted, personal, or off-list promotions or enterprises.
*** Membership of this list is a privilege. Any membership that compromises the integrity and purpose of the stiffman.net list or noncompliance of any set terms shall be grounds for dismissal at the sole discretion of the list manager.***
Frequently Asked Questions --- FAQ
(revised 006, 18 February 2009)
1.) What is Stiff Person Syndrome?
Stiff Person Syndrome (SPS) is a rare disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities; often beginning very subtly during a period of emotional stress. Most patients experience painful episodic muscle spasms that are triggered by sudden stimuli. An auto-immune component is typical and patients often have other auto-immune disorders. Symptoms usually begin in the mid-forties. The severe muscle stiff-ness of SPS responds to benzodiazepines. Testing with an EMG (electro-myogram) needle will assist the diagnosis and testing the blood for anti-GAD (glutamic acid decarboxylase) antibodies (if present at very high levels) will confirm the diagnosis in the majority of people with SPS.
Stiff Person Syndrome
http://hopkinsneuro.org/nini/disease.cfm/condition/Stiff_Person_Syndrome
Johns Hopkins Medicine
2.) What is an E-mail list?
An email list is a means to communicate by computer email to a group of people who belong to a select membership of common interests. You become a member of the list by subscribing. Any information or opinions expressed on this email list, on the discussion forum, or privately, are solely those of the person writing the post.
3.) How do I subscribe?
To subscribe: send email, from the address that you want added, to sps-join@stiffman.net (no subject or body message needed).
4.) How do I post an email?
Write the subject of your post in the subject section of the heading. Address the post to the group at: sps@stiffman.net. Write your message and send it. If you are just replying to a list email, write your post and hit reply. Every list member will receive any post you send to the list.
5.) What if I want to send a private post?
If you wish to send a post privately, you must only enter the private email address of the person you want to receive your message in “send.” Just that person will receive your message. Clicking reply to a group post will send your message to the entire list.
6.) Are there any rules of etiquette for posting on this site?
a.) The list is not to be used for the promotion or sale of any merchandise or service. Obscene material will not be tolerated. Inappropriate posts directed at ethnic backgrounds, religious beliefs, political affiliations, etc., or which suggest any form of degrading or prejudiced content will not be acceptable in any form. Harassing or abusive posts will be cause for dismissal.
b.) If you are sending a post that is off the topic of SPS, put in capitol letters OT or the words - off-topic - in the subject section of the heading so all list members know the subject matter of the post does not have anything to do with SPS.
c.) If the response to a post is changes from the original message, please change the subject topic in the subject section of heading to clarify the post content to the list.
d.) The email address for the support group is for emailing within the group only. Any other use of the email address sps@stiffman.net is strictly prohibited.
The list management requires all list members to follow rules of courtesy.
7.) How do I unsubscribe?
To unsubscribe: send email from the account that you are subscribed as to sps-leave@stiffman.net (no subject or body message needed)
8.) Addressing common problems. How do I contact the list manager?
The software that runs the list will unsubscribe you if email sent to you is rejected for some reason; if you find that you are not receiving email then try resubscribing (see item 6 above). If you have problems (un)subscribing to the list or questions, send an email to: sps-owner@stiffman.net. We will respond as quickly as possible.
If you ever need to get in contact with the list manager, (You have trouble unsubscribing, or have questions about the list itself.) send email to sps-admin@stiffman.net. This is the general rule for most mailing lists when you need to contact a person.
List archives: can be found at http://stiffman.net/mailman/private/sps
You will need the password that you received in your welcome message to access them.
ONE DAY AT A TIME
To see the collection of prior postings to the list,
visit the sps
Archives.
(The current archive is only available to the list
members.)
|
|
Subscribe to sps by filling out the following
form.
This is a closed list, which means your subscription
will be held for approval. You will be notified of the list
moderator's decision by email. This is also a private list, which means that the
list of members is not available to non-members.
|
