Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Lewis-Sumner Syndrome

What is Lewis-Sumner Syndrome?

Lewis-Sumner Syndrome is a dysimmune multifocal demyelinating sensorimotor neuropathy.

 

Lewis-Sumner Syndrome is a dysimmune multifocal demyelinating sensorimotor neuropathy.
Acknowledgement of Lewis-Sumner Syndrome has not been added yet.
0.9http://www.orpha.net
Synonyms for Lewis-Sumner Syndrome has not been added yet.
Cause of Lewis-Sumner Syndrome has not been added yet.
Symptoms for Lewis-Sumner Syndrome has not been added yet.
Diagnosis of Lewis-Sumner Syndrome has not been added yet.
Diagnostic tests of Lewis-Sumner Syndrome has not been added yet
Treatments of Lewis-Sumner Syndrome has not been added yet.
Prognosis of Lewis-Sumner Syndrome has not been added yet.
Tips or Suggestions of Lewis-Sumner Syndrome has not been added yet.
References of Lewis-Sumner Syndrome has not been added yet.
Newly Diagnosed Created by iOneDar
Last updated 17 Feb 2013, 12:40 PM

Posted by iOneDar
17 Feb 2013, 12:40 PM

Chaplainpat, Thanks for sharing your story. Have you experienced improvement since you started your treatments? What has it been like to have LSS since 2008? Looking forward to learning more.

Posted by chaplainpat
13 Feb 2013, 04:37 PM

My story -- In May 2008 two fingers on my left hand got tingly and slowly this condition increased until my entire left hand was affected. Then it jumped over to my right hand and soon both hands caused me great concern. I saw 11 different doctors that year and no one knew whar was wrong with me. MS and carpal tunnel syndrome were suggested. I finally got a new general doctor and after a full physical he sent me to a new neurologist at MSU. I had no hope for a positive outcome. After all, I had already seen 3 neurologists. Imagine my joy when I exited that appointment with a diagnosis of LSS and started treatment in four days. She was not the doc that my general physician had referred me to - - but a substutition by the clinic. Coincidence?? I see her as an aswer to prayer and found her to be an answer to myprayers and an absolute angel! You see, my new physician had studied unde Lewis Sumner at Wayne State in Detroit!! I had or 4 days a month and took Cellcept beginning at 500 mg and

Posted by iOneDar
9 Feb 2013, 10:55 PM

Hi Beth Thanks so much for writing. It is encouraging to hear from someone who understands the unique path that I'm on, but I'm sorry you have this disease as well. As far as I can tell, my symptoms are symmetrical. It all began very quickly and has steadily declined. At first, it was mainly the sensory (pain, numbness, tingling) and the weakness was not as obvious. I discovered early last summer that the reason for the shortness of breath I'd been experiencing was because my right hemidiaphragm is paralyzed. I am awaiting insurance approval for IVIg treatment. The initial plan is for me to have it over two days for three months in a row and then re-evaluate. I glad to hear it has gone well for you - the horror stories on the internet have made me feel a bit apprehensive. I noticed you're from NJ. My wife and I grew up in NJ. After living for a season in VA and MO, we settled in PA 17 years ago with our four children. I'd love to connect further with you by phone or email. Thanks again for your response. It's good to know someone else "out there" is dealing with this. The "very rare" status of this disease/condition seems so isolating. My best to you, Don Lancaster County PA

View Full Thread (2 more posts)
Are you satisified with your neuro(s)? Created by bbrooks
Last updated 21 Jan 2010, 06:20 PM

Posted by bbrooks
21 Jan 2010, 06:20 PM

Hi! While I am fortunate enough to be doing well, my neuro himself admits that he's more a diagnostician than a long-term-care doctor. So I'm keeping my eyes and ears open for a doctor with experience treating CIDP/LSS patients over the long term. Where I live, I can easily get to NY or Philadelphia. Anyone got a suggesion for me? Thanks! B.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. 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.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I have CIDP and LSS and MGUS.
Hi! I was diagnosed with LS...
I have had Lewis Sumner Syn...
I have just been diagnosed ...
I had polio at age 13 - had...
I was diagnosed in Septembe...
I was diagnose with lewis s...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Newly Diagnosed

Created by iOneDar | Last updated 17 Feb 2013, 12:40 PM

Are you satisified with your neuro(s)?

Created by bbrooks | Last updated 21 Jan 2010, 06:20 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.