Multiple System Atrophy
What is Multiple System Atrophy?
Multiple System Atrophy is a rare neurodegenerative disease caused by cell loss in the brain imparing the autonomic nervous system and the motor system.
| Name | Description |
|---|---|
| Impaired balance, coordination and speech | Impaired balance, coordination and speech |
| Slowed movements | Slowed movements |
| Stiffness and tremors | Stiffness and tremors |
| Loss of sweating | Loss of sweating |
| Tiredness | Tiredness |
| Impotence in male patients | Impotence in male patients |
| Blurred vision | Blurred vision |
| Constipation | Constipation |
| Swallowing difficulties | Swallowing difficulties |
| Head or neck pain | Head or neck pain |
| Urinary difficulties | Urinary difficulties |
| Sleep disturbances | Sleep disturbances |
Last updated 20 Apr 2009, 11:43 PM
20 Apr 2009, 11:43 PM
I am glad you've been diagnosed so you can begin to manage your symptoms, and I wish you the best with this. My companion has MSA, he was diagnosed 11 years ago and has beat the odds since then, but now we fear the end is near. The symptoms from which he has suffered include decreased stability and balance when walking, standing, and turning; blurred (double) vision; problems with swallowing (he has had to re-invent how to swallow to compensate - liquids are more difficult than solids); occasional stiff body movements and occassional dizziness; but most of all, breathing difficulties due to atrophy of chest walls - he uses a BI-PAP machine much of the day now, and always every night. One website we have found very helpful is www.shy-drager.org - it is full of all kinds of information about MSA and very easy to understand. If we can answer any specific questions for you please let me know. I will try to check the discussion board.
20 Apr 2009, 06:38 PM
I've just been diagnosed with MSA and I am trying to get further information from people who have this. I've gone without a diagnosis since 2006 when suddenly it struck. My doctor finally did a PET scan and found out that the cerebral area of my brain is slow in accepting the radio active glucose. Can anyone describe your symptoms. Thanks a lot.
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Just diagnosed
Created by Patt_c1 | Last updated 20 Apr 2009, 11:43 PM
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