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Arachnoiditis

What is Arachnoiditis?

Arachnoiditis is a rare neuropathic disease caused by the inflammation of one of the membranes that surrounds the nerves of the central nervous system.

 

 

Arachnoiditis is a rare neuropathic disease caused by the inflammation of one of the membranes that surrounds the nerves of the central nervous system.

 

Acknowledgement of Arachnoiditis has not been added yet.
Prevalence Information of Arachnoiditis has not been added yet.
Synonyms for Arachnoiditis has not been added yet.
Cause of Arachnoiditis has not been added yet.
Causing burning, patchy stinging and numbness to extemities, dizziness, uncontrolled bllod pressure high and low with administration of BP medications or not. Severe electric like pain in muscles of extremities. Multi-symptoms of which are dibilitating in nature and non responsive to tradtional pain treatments or drugs in my case. Mine diagnosed by the VA likely caused by oil based contrast used in myleogram(s) used in the mid seventies.
Diagnosis of Arachnoiditis has not been added yet.
Diagnostic tests of Arachnoiditis has not been added yet
Prof. Dr. med. habil. J.-P. Warnke, Neurosurgeon Paracelsus Hospital Zwickau,Germany, is able to perform treatments. He actually is the inventor of this procedure and the only surgeon in Europe. Apparently there are a few more doctors in the USA and Australia, who have been educated and trained by Prof. Dr. med. habil. J.-P. Warnke.
Prognosis of Arachnoiditis has not been added yet.
Tips or Suggestions of Arachnoiditis has not been added yet.
References of Arachnoiditis has not been added yet.
Are you a Zebra? Find your herd! Rare Disease month 2018! Created by Calliope Press
Last updated 2 Feb 2018, 03:24 AM

Posted by Calliope Press
2 Feb 2018, 03:24 AM

Are you a zebra? Find your herd!

Arachnoiditis patients have more in common with other Rare Disease patients than you think! This month is Rare Disease month and Feb 28, 2018 is #RareDiseaseDay. Zebras welcome here: http://www.livingwithraredisease.com/2018/02/health-related-quality-of-life-study.html

A.A. Created by Beat66
Last updated 5 Sep 2016, 12:38 AM

Posted by Millzy
5 Sep 2016, 12:38 AM

Hi everyone. I am Tammy. I live in Delaware. I found out I have this after having my MRI's reviewed by an AA doctor. He is world renowned, perhaps you have heard of him, Dr. Forest Tennant. I am looking for a specialist closer so I can get an 'official' diagnosis. It really didn't surprise me because of my symptoms and talking to others on a pain forum I go to with AA. I have a wonderful pain management doctor here who is so kind and doesn't treat you like your'e an opioid seeker. I haven't seen him since I got this information from doctor Tennant. I'm praying he knows what it is. I also have syringomyelia, neuropathy and rheumatoid arthritis. I have been denied by SSDI twice, which is ridiculous. i hope to connect with those who understand and possible receive treatments. Thanks for reading. Have a pain free as possible day.

Posted by Beat66
22 Mar 2016, 06:16 AM

Hi everyone. My name is Beat, I am from Switzerland and I am suffering from Arachnoiditis. There are many uncertainties about this disease and especialy here in Europe, it is an unknown. I am hoping to connect with patients or relatives of patients to explore the possibilities of treatment and more. Looking forward to get connected.

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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.

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My medical history is quite extensive but my main issue is the chronic pain that accompanies my diagnosis of adhesive arachnoiditis of my spine. I am in pain 24/7. I have tried bearly...

Hi. I'm not sure if you want an about me bio, or about me medical history so I'm going with the former. I am from Texas, currently living in Delaware. I served in the US Army and worked as a...
Had TC surgery in KC in 2011. Did not improve. Still looking for a solution.
I am a Swiss national and suffering from Arachnoiditis
I have RA since 2001, along with a back problem. Had an MRI this past summer and was told I had adhesive arachnoiditis. I am interested in finding others with this disease and finding out how they...
Hi, I am a sufferer of Arachnoiditis, I have had this disease since 2005..I am in pain 24/7..I have done all kinds of therapy and invasive procedures..Now, I am on a pain med regimen, this is the...
Hi, I am a sufferer of Arachnoiditis, I have had this disease since 2005..I am in pain 24/7..I have done all kinds of therapy and invasive procedures..Now, I am on a pain med regimen, this is the...
I was diagnosed with parkinsons disease when i was 36. i have had 3 back surgeries and several cortisone shots in my spine. i had my last back surgery in july and with no good results.. I have been...
57 Year old male, divorced for 8 years and raising a teenaged grandchild.

 

I have worked the same job, same place for 17 years and very loyal to the company as well as all aspects of life.

...


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Are you a Zebra? Find your herd! Rare Disease month 2018!

Created by Calliope Press | Last updated 2 Feb 2018, 03:24 AM

A.A.

Created by Beat66 | Last updated 5 Sep 2016, 12:38 AM


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